What you do speaks so loud that I cannot hear what you say.
  - Ralph Waldo Emerson

I will be the first to admit that it is incredibly easy to become entangled in the mob scene of pop-culture Christmas and the frantic energy to buy love, to give love in shiny packages and dollar signs, and to measure worth and value in things. After all, society inundates us with the message that only perfect is acceptable, only more is even worth considering, and only money spent speaks of love.

Last Christmas season I had an in-depth, advanced level course in the fact that all of the superficial things that receive the publicity and glamor of the holidays are meaningless. I spent 11 days from December 12 through the evening of December 23 inpatient as doctors tried and failed to determine a diagnosis regarding the progressive muscle weakness and inability to tolerate food (and go figure, one year later the second verse is an echo of the first). Yet even though I was 500+ miles from all of my biological family, I was not alone. Just as I had not been alone when I was first hospitalized in October, or any of the time in between. God has blessed me with a second family in Virginia, with incredible friends who constantly amaze me with their love. On Christmas Day last year I somehow managed to get myself dressed up in a dress I had bought two months earlier for the Christmas I planned to spend in Michigan and laid on the couch as they included me in their Christmas festivities. Their little blue eyed boy, my beautiful mystery of a student who became my beautiful gift of so much more, sat on my lap and opened gifts with me. I had a family and love, and I learned that actions tell more about a person than words ever could.

This Christmas I miss my dear second family in Virginia, but was blessed to be with my family in Michigan. On Saturday my mother's family all gathered for the first time in two years. I was nervous, because it was the first time any of them would be interacting with me since I had gained wheels and I was afraid I would be treated differently because of it. More than anything, I just wanted to be seen as me. I had a wonderful time and for the most part I was accepted with grace and love. So much has changed in the dynamics of our family since I have grown up, and I treasure my family more than ever. There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw.

I loved watching the little ones run around, open their presents, and just be kids running wild in celebration. Words spoken, and unspoken but communicated through actions, let me know that I am still very much a part of the family. Our annual tradition of the wrapping paper fight was especially well done this year, with some strategy and team work involved.

More than the gifts, or the lights on the tree, for me it was about the Christmas presence - truly being there, truly choosing to offer your heart to one another, and loving beyond any differences. The presence of the gift of peace and hope and forgiveness and love.

This past weekend was the family Christmas activities for my father's family. A tradition of sorts has been established that each year the families gather at a hotel that has a swimming pool (easy entertainment for the kids grown and not) for the weekend. We have a big family meal on one day and then a smaller get together the other day for presents and such. This year the chosen hotel was just one town away from where I live, so the original plan was for me to spend the day with everyone and come back home at night. However, my stepsister's husband had to work and so she invited me to join her and her kids in their hotel room. It was a wonderful weekend where my braces and wheelchair and crutches were insignificant, where no one treated me any different and where I could just be a part of a family celebration. It was just assumed that I would be included rather than looking at obstacles and thinking it would be too much work. I have not always been close to my stepsister and brother, or to my stepmom, especially when I was growing up but they have genuinely formed a family that cares about me and accepts me and is protective of me without limiting me and that just gets that in spite of all the medical stuff I am still Bethany. I thoroughly enjoyed being able to swim so much, as in water I can move my muscles so much easier than I can in any other situation. I do cheat and use a flotation belt because I struggle to maintain balance and to hold my legs up when swimming, but the difference in motion is amazing. In the pool I could participate in all of the fooling around and playing without struggling with my wheelchair. I was able to play with my nieces in an environment that was without barriers. On Saturday evening, the spa was cooler than usual so I was able to safely sit in the warm water and place my feet in front of one of the jets for what was an incredible "massage" that helped to loosen up my muscles.
Two funny stories. The first involves being completely and inappropriately dressed for an occasion. At the hotel, the swimming pool was directly next to a large conference room (actually it connected through sliding glass doors and could be opened up so the pool and room were connected). As we were swimming Saturday morning, complete with children splashing and jumping into the pool and shouting and being kids (and some adult males being kids with them), we discovered that a funeral memorial service was being held in that room directly next door. Now, not only was it bad planning to place a somber event next to the pool the weekend before Christmas but the only way from the pool back to our room was either to go up a flight of stairs and across the upper floor then down a flight of stairs (um, apparently the wheelchair was not a clue to the hotel staff that this plan was not a reasonable option) or to go right through the buffet area for the funeral. So not only did we have to parade soaking wet, in flipflops or little bare feet through the somber set up but my swimsuit cover up? A nice wrap with brightly colored skulls and cross bones all over it. I have now officially crashed a funeral in my swimsuit and a skull and cross bone cover-up.
Second story requires some background knowledge. Last week my stepsister graduated from nursing school. Awesome! My dad and stepmom obviously went out to her graduation. I forgot what day her graduation was and so when I had a toilet emergency on that day I called them to see if they happened to have a plunger I could borrow. As soon as I called, I realized where they were and that from 3 hours away they were not going to be able to help me out. They actually did help me through a call to a friend who lives in the same apartment complex who hunted down a plunger for me, and all it cost me was some embarrassment. So yesterday while we were opening presents my dad and stepmom announced that they had a very special present for me. With a large red and green bow on top and red ribbon curling around it I was presented with a plunger complete with a tag reading "In Case of Emergency". I had to laugh, and everyone who knew the saga laughed along with me. So now when I am asked what I got for Christmas I can proudly say "a plunger!". :)
Tomorrow I am going over to my Mom's to spend Christmas with her and then on Saturday we are going to my Aunt's house for Christmas with my Mom's family. I am more nervous about that event because no one from her family has seen me or interacted with me in person since I became sick with whatever this dystonia/progressive spastic paraparesis/unknown syndrome is. I just want people to treat me like me and not be uncomfortable or all weird because of the chair and the changes in my life. But I am so excited to be celebrating Christmas with far greater health than last year, and not desperately ill and an 11 day inpatient stay right up until late on December 23. And I can even eat all of the Holiday foods this year too!! What a difference a year makes!! I am so blessed!

I have decided to start to share some of the many, many multitudes of stories and lessons that I have stored away from my years as a teacher both because they are incredible meaningful to me and they might be of some small assistance to someone else. I decided to start with one of my favorites.  I learned early on that I refuse to negotiate with any child who still needs their rear end wiped after going to the bathroom or who still wears diapers. The classroom is not a democracy, it is a dictatorship and I am in charge. I offer plenty of opportunities for choices, but I never make no an option when it is not an option I am willing to accept. Instead of asking "will you please clean up the toys" I might ask "do you want to pick up the blocks or the toy cars". I may ask a child "can you walk to the table by yourself or do you need some help to make the right choice?" or "Do you want to sit in the red chair or the blue chair?". This does not mean that my delightful, inquisitive, stubborn children did not routinely put me to the test in negotiations.
During my first week of student teaching we were transitioning from center play time to lunch and Desiree had been using the computer to play an alphabet/phonics game. When I informed her it was time to wash her hands and come sit at the table she stared me in the eyes and said "No". I gave her an opportunity to make the right choice and she informed me that she was not finished on the computer and was not going to come eat lunch. A hostage negotiation situation was quickly emerging. I very calmly walked over to the computer where Desiree was working, reached behind it to the wall outlet and unplugged the computer. I then informed her "Computer time is over. Do you want to wash your hands by yourself of do you need me to help you?" Completely shocked that I would follow through and actually disconnect the computer, Desiree very calmly washed her hands and sat down as requested. At no point did I have to raise my voice, or bargain with her, or physically engage with her.
Ella was a highly precocious 2 1/2 year old who never failed to keep me on my toes. A peer had a highly desired toy camera, and Ella decided that the best way to get this toy was to cry and have a dramatic tantrum. I informed her that her choices were to wait patiently for a turn, or to go without playing with the camera for the day because crying and screaming were not going to work. At that moment her very sympathetic peer delivered the camera to her in an effort to make her feel better. With a wicked grin, Ella looked at me and said "Well it worked for me!" I replied "Not so much. The camera is going in time out for a while until you can show me that you know the right way to ask for it and to wait your turn. Crying and screaming is not how you get the things you want in this classroom."
For some reason my three year olds loved to run laps around my classroom like it was a track course instead of a classroom filled with obstacles and equipment. Rather than repeatedly asking them to slow down or surrendering to the chaos, the rule became a simple choice that laid out the consequences and avoided any negotiations. "Show me walking feet or show me sitting bottom". I did get the occasional adorable response along the lines of "my feet just won't walk, they HAVE to dance!". Then we might resort to a few rounds of shaking out sillies out at circle time so our walking feet could come back out. :)
Never did I make no a choice unless I was willing to have a child give me no as an answer and respect that choice. No could be a choice for choosing materials in an activity, for activities during free play, for choosing reinforcers, for deciding if a child wanted a turn during a special activity and in those situations I respected it. No could not be a choice in following directions, obeying rules, and participating in academic activities so instead of negotiating and entering into plea agreements I simply offered choices where either one was still an appropriate choice and a victory. Often this meant doing the task independently or requiring help to do it, but either way the task got done without arguing over it.

Expectations. I think the biggest issue, besides my inherent dislike of the teaching university approach to medicine, was a failure to match up expectations. My expectations for the appointment with the specialist, the neurogenetics specialist, was that he would be offering a second opinion and possibly assist in naming the overall syndrome that has caused the dysautonomia, the immune system difficulties, the ataxia, the sensory losses, and the abnormal muscle tone. These expectations came from the fact that my neurologist whom I adore sent me to him for his opinion on whether or not this is progressive spastic paraparesis and for a diagnostic second opinion. The doctor's expectations seem to have been that he would provide a diagnosis for the symptoms and begin a treatment plan, but not address the overlying issues or try to put the pieces together. Thus when he made the "profound announcement" that my feet and lower legs seem to have dystonia I was less than impressed. We went through that diagnosis months ago. I was hoping for something new. I already knew I have "dystonia" - abnormal muscle tone- in my legs. We need to know WHY and regarding that all he could say was that he was puzzled. Really? I drove 2 hours each way and waited 3 months to see you to get a diagnosis I already had and to have another doctor admit that they are puzzled? He thought he was accomplishing something great by pronouncing it dystonia, and I was just trying not to cry because we were back to where we were months ago. He even reverted back to the "toxic medication" diagnosis that was tried back in December 2008 and debunked when I was removed from virtually all of my medications and continued to get sicker. So with that off the table, he proposed some treatments. One, I have to stop taking the Reglan that I just started a month ago because Reglan can cause and aggravate dystonia. The only problem is that the reglan is what is allowing my digestive system to function and for food to progress out of my stomach in anything near a normal time frame. So now I am stuck trying to problem solve with my internal medicine doctor (I do not have a GI doctor, and really don't want to add to the village of doctors) something that will help because otherwise by dinner I still have breakfast sitting in my stomach. Then he wanted me to start on L-Dopa a few weeks after the reglan cleared my system. Something about L-Dopa triggered a warning in my mind but I could not pull to memory why. Of course it was not until after I got home that I remembered why L-Dopa was setting off alarms. In college I was given L-Dopa to try and treat muscle spasms associated with restless leg syndrome and had a horrific reaction to it that caused hallucinations and very abnormal behavior throughout the night. I prefer not to see things that are not really there, so I need to talk to MY neurologist and see what we can do for an alternative plan. The doctor at U of M also seemed to think he was taking over my care, but that was not my expectation and is not something I am agreeing to unless the doctor I currently see refuses to be my neurologist anymore. I trust her more, I prefer her style of medication, and she "gets me" better - she listens when I talk, she appreciates my knowledge base, she treats me as part of my own medical team. Yesterday I was treated repeatedly as if I were a teenager instead of a closer to 30 than anything adult. Curses upon looking so darn young for my age. The doctors also overlooked critical information like the newly emerged heart murmur, the association of the onset of muscle weakness with the inability to eat, the fact that my legs turn "cadaver leg" purple/gray after standing for just a few minutes, the loss of sensation, and the pain after using muscles as well as weakness and fatigue. While I am thankful the doctor confirmed that there is indeed something abnormal going on, I am frustrated that my expectations and his did not overlap virtually at all. I now hope when I meet with my neurologist (she said to see her after this appointment) we can discuss these expectations, my experience, and how to incorporate this into what she already believed and knew and go forward from here. Two steps forward, two steps back, but at least steps are still being taken.

I considered removing the post from a day or two ago, but the emotions in it are so very real and are just as much a part of what this journey entails as the laughter and joy. It may not be as pretty or enticing, but it is a side of dealing with this and the truth is that even though I am able to remain positive a lot of the time, I am only human. When I read back through this at a later date, I want to read back through and see an accurate representation of the journey - both the beauty and the shadows. I apologize if that makes anyone uncomfortable.
Moving onward, today I have a very important medical appointment with a top specialist at the University of Michigan. He is a neurogeneticist and also a specialist in progressive spastic paraparesis/paraplegia. My amazing neurologist referred me to him for a consult to see if he thinks this fits the pattern of the progressive spastic paraparesis (PSP) or if he has any other ideas regarding what this could be. All of my doctors seem to agree there is a genetic disorder at play here, because the statistical odds of so much "going wrong" in one person at such a young age at the same time without a genetic "umbrella cause" is astronomical. As one neurologist put it the odds are like being hit by a bus while being struck by lightning and winning the lottery without having bought a lotto ticket.
This will make for a long day. A long drive, most likely a long wait for the doctor (specialists never seem to run on time), a potentially long appointment (the paperwork said 1-3 hours! What takes 3 hours???), and then a long drive home. But if there is hope for answers, it is all worth it. I am nervous though. I am nervous that once again I will get my hopes up only to have them smashed. I am nervous that the doctor will not be receptive to listening to me and truly hearing me. I am nervous that once again I will be treated with disrespect and my concerns and knowledge devalued. I am nervous there may be no answers. I am giving these fears to God and praying that His will be done, and that I have an open heart to His will.
It is beyond cold here today (windchill is in the negative digits) so this could make for a fun doctor visit. Because of the dysautonomia I have to dress in layers in order to maintain body temperature. Layers include leggings, leg warmers, and multiple pairs of socks underneath my jeans, and two or more shirts layered beneath my jacket. In winter I always have to wear a hat to help keep warm (sometimes even in the house), and scarf and gloves. So I have a feeling I may end up having to change once I am at the doctor's office to remove a few layers. I am very much like the kid in A Christmas Story who can't put his arms down. But it is either that or my body temperature rapidly plummets. Considering I drop down around 97.4 inside the house without provocation, imagine what it would drop to outside in the cold!!!
I will update with any news from the doctor, any funny stories, or with a new journal entry soon. I have coffee to finish drinking and then I need to start to assemble the layers for the day. :)

I have some really beautiful pictures that I am going to come back tomorrow and add to this post as I am using my new mini computer that I received for signing up with Comcast and all of my photographs are stored on Elphalba the large laptop. Beautiful roses from a real rose garden.
Anyway, I realized tonight that I only write about the more positive aspects of dealing with an illness such as mine on this journal and someone brought to my attention that this does a complete disservice. I am not telling the full story, I am hiding the truth, and I am basically telling lies of omission. Should anyone in a similar situation ever find this journal I want them to be able to read it and know that the hard times are just as normal as the good times, that there are incredible struggles, that there are times where you wrestle with God but that in the end it is still worth it.
Right now I am dealing with a lot of anger - anger at God for allowing this to happen and not intervening with a miracle, anger at my body that continues to betray me, anger at a world that is so inaccessible, anger at the fact that my life was turned upside down like a snowglobe and vigorously shaken and the pieces have yet to fall down around me in any order. I know that this is perfectly normal and a part of the grieving process for the loss of who I used to be. I am also weary. so very weary. Weary of constantly having to be vigilant for complications, for simple things as having to remember to eat and drink, of having to check continuously that the medical care I am receiving is appropriate and no mistakes are being made, of having to be an advocate for myself and face the wrath of doctors and nurses who prefer placid, docile, and unquestioning patients. I am weary of the hunt for a diagnosis and over a year of not knowing, of over a year of feeling powerless to something that has held me hostage in my own body. I am tired of living knowing that at any moment another autonomic crisis can strike without warning and that we have no plan for treating these other than careful fluid administration and time.
A year ago I was certain we would find a diagnosis, treat it, and I would consider on with my life like I always had in the past when a new medical issue arouse. I never anticipated being where I am now, and the permanency of the situation is beginning to really hit me. This very well may be as good as it ever gets and that frustrates me. I am also tired of being sanctified like some holy saint for dealing with this illness "so well" and being so "brave and strong" and doing what others are certain they "could never do". I might be mistaken, but I am pretty sure I never signed up for this. I am living the life that I was given to the best of my ability and I see nothing courageous about that and you would be astonished by what you are capable of doing when it is the only option.
I know that this is not how I normally write and I am taking a huge risk writing with an open heart about the more difficult aspects of living with this disease, these many illnesses, this body that is damaged and malfunctioning. Before anyone worries, I am not depressed and there are countless times in any given day when I am joyful and overrunning with gratitude for all that I have. But the journey is not easy and I would do it a disservice to continue to hide the hard parts and provide a sugar coated reality. No one promised a rose garden, but more than that I think even in the beauty of a rose garden there are sharp thorns that slice at you.
Tomorrow is another day, a day yet untarnished and untouched and for that I am always thankful. Each day is a new start, a new beginning, and a new gift. And I never once have questioned how richly blessed I am, especially with love.

It has been a while since I wrote anything on here. I think part of it is just not "feeling" like writing, and part of it is not feeling like I have anything worth writing about. The holidays are very special for me, but they are also filled with memories of how bad things were last year, and with anniversaries of "lasts" starting in September and going through December. December 12 is the one year anniversary of the last time I walked independently, December 24 is the one year anniversary of when I received my first wheelchair (Merry Christmas!).

This post is going to be a bunch of short random notes and such, hence its title "Randomimity" - my word for an assortment of random and unrelated things that are put together, often the way my mind works leaping from one thing to another. Linear thinking is not my strength, as I tend to think more in the fashion of a thousand ping pong balls set loose simultaneously in my brain at the start of an idea.

I have been receiving packages in the mail from UPS and FedEx a lot recently as my Christmas shopping has been done online. Living in a small town and having limited access to transportation, amazon.com has been a blessing for Christmas gifts. However, apparently I need to call UPS and FedEx and ask them what visual cue they need beyond the large, traffic cone orange ramp directly in front of my apartment door to realize that perhaps just dropping the package on the ground beside the ramp and leaving (sometimes with a courtesy bang on the door) is not helpful. I either have to risk falling on my head trying to pick them up from my chair, or get out of my wheelchair and crawl in order to pick up the packages. The good news is that I am almost done with my Christmas shopping.

Those beautiful, colorful AFOs that are pictured in my header? Those have become expensive, colorful pieces of art for the past two weeks. Due to the fact that my feet go into a spastic toe point and rotation even when in the braces, I have developed two red, puffy, and calloused and cracking areas over bony deformities on my feet (the bones of my feet have shifted from the constant spasticity and abnormal positioning). The risk of severe pressure sores caused my neurologist's office to make the decision to cease wearing the braces until my feet heal and then we will problem solve a solution. I really hope those do not end up being $300 (my copay) pieces of art long term!!!

A few nights ago I went with my stepmom to a Christmas party through the Disabled American Veterans. It was a lot of fun, the food was great, and I did fairly well at the gift raffle too. Considering I never win anything other than the genetic lottery ;) I won a nice "smelly stuff" bath set and an electric griddle. Last time I tried to make pancakes I set of the smoke alarms in my apartment for well over 30 minutes because the frying pan smoked, and I could not climb and get to the smoke detector to turn it off or wave something in front of it. All of the neighbors knew that I burned pancakes. Humiliating when you have people you don't know asking you if you like your pancakes well done. :) So now I can try again with proper equipment. I also got to test my new wheelchair in some interesting conditions including gravel, muddy dirt, and grass up onto a curb. I was able to navigate all of it on my own and even got up onto the low curb without needing assistance or having to go backwards.

December 11 I have an appointment to see a specialist in progressive spastic paraparesis to obtain a second opinion at the request of my amazing neurologist. I am nervous because this journey has been so difficult with so many doctors being unable to figure out what is going on and some even falling back on the "you are female, it's all in your head" diagnosis. I am so desperate for a diagnosis, an answer, a name of this monster that it makes me nervous to get my hopes up and nervous that once again I will get an "I don't know". Then on December 15 I have pulmonary function testing because my lung function never did appear to return to normal from when I required oxygen inpatient last year, and I am having some shortness of breath with exertion and at night.

A few weeks ago I proved that a hot glue gun is aptly named and significantly burned my finger, causing two blisters (one the size of a quarter, one the size of a dime) and still healing skin now that appears like it will scar. Personally I blame Martha Stewart for making Americans like me who do not have any arts and craft abilities think that it is oh-so-easy to do anything with a hot glue gun, glitter, and supplies from a craft store. It's not. I am not that kind of creative. I may be able to rig up equipment for children, create sensory activities that are functional and fun, and build my own teaching tools, but I can not manage crafts that require hot glue and frills. I need to remember and respect my boundaries.

I will try again to write a normal entry soon, but I make no promises. :) But I am alive, relatively well (I caught some sort of funky virus that is enjoying messing with me, but so long as it does not bring the flu along as a party guest I can totally make do), and enjoying the holidays! Thank you for still choosing to be a part of this journey with me, even though it has more bumps than a mogul hill and more left turns than a NASCAR race.