* Photo from the last hike I took in September 2008, Prince William Forest.*

I had all sorts of plans for splendid entries on this journal (I still cringe at the word blog, I do not know why - maybe because it rhymes with "frog" and I have serious issues with amphibians?). Entries about the mixed emotions of sending off the blood work for the DNA testing for mitochondrial disease, entries about the amazing day that Mother's day turned out to be, entries about how when you are in a wheelchair you are all too often invisible both literally and figuratively and how this nearly turned me into a hood ornament for a Buick. But this crazy little thing called life kept stepping in and changing up my plans. So now I will be presenting My So Called Life, the abbreviated version.

* A week and a half ago I finally had the opportunity to access a hospital based laboratory to draw the single (Large!) tube of blood required to run the DNA testing for Mitochondrial Disease. The technician was very pleased with how "idiot proof" (her words) the self contained kit was, and I was pleased that I did not have to put that theory to the test at the scary, run by idiots local hospital. The downside of living in a very small town is that the medical care locally is sketchy at best - my primary doctor is a good 45 minute drive away, my specialists are about 90 minutes away. So now comes the waiting for results. I have mixed feelings as to what to pray for with the test results - the Dr is confident enough in his diagnosis that he has registered me to receive services through the MDA, and this diagnosis is the first thing that explains my entire medical history so a positive result would be a nice confirmation and would spare me the need to undergo a muscle biopsy. Given that I am on blood thinners, a muscle biopsy would be a bloddy mess and given that I have severe dysautonomia, a muscle biopsy which requires sedation would be a tightrope walk. Yet it just feels wrong to pray for test results to be positive for a disease that has no cure and no treatments. Not that any result is going to change what is going on inside of my body - either way there is a progressive disease process active and frequently making its presence known.

* On a much happier topic, Mother's Day was a day filled with priceless memories that I will treasure forever. My brother managed to orchestrate a series of surprises for just about everyone involved and had my two aunts come in to town to meet up with us for lunch. Neither my mom nor I knew anything - we thought we were going out to eat with my brother's family-, and my one aunt did not know the other was coming. I forgot to take my camera so I have no pictures but it was so much fun. Someone at the restaurant made the mistake of positioning the 9 of us front and center in the restaurant, obviously not comprehending the fact that any family gathering is a loud and rowdy affair. :) I spent half of the time at lunch at the "kiddie" end of the table with my nieces and nephew - well my nephew had his iPod in his one ear and was busy texting so the only time he spoke to me was to call me a tattle tale when I warned his mom that he has sabotaged her drink (I called him a teenager and he returned to sulking), and my older niece was constantly running from the table to check the score of the Tigers baseball game when she was not sulking because she stayed up too late the night before so really I visited with Little Bit. Little Bit is highly creative and can entertain herself for hours with just about any found object, so we were thrilled with crayons and a piece of paper but I did have some trouble following the ever changing rules of her games. Suspiciously, the rules changed every time she started to lose. :) I spent the other half of the time at lunch with the "Big People" at the adult end of the table where there was much laughter. After lunch, my one aunt came back to my mom's apartment to visit and we had a great time. I also had the honor of giving my mom a very special present that has a great deal of meaning to both of us.

* Being in a wheelchair is often like donning Harry Potter's Cloak of Invisibility. Suddenly people talk over your head, to the person with you, and about you but never to you. People will look everywhere but at you if you do talk to them, and they feel some bizarre compulsion to both shout and to revert to near baby talk. Because I obviously became hearing impaired and lost more than half my IQ points the minute I sat down in my wheelchair. What I failed to realize until the other day was that I am also literally invisible to many people. I was rolling in a parking lot at a large superstore, when all of a sudden a large vehicle whips out of a parking spot directly at me at about 30 mph. I used my emergency brakes (my hands) and my horn (screaming) to alert the driver and by the time we both came to a stop there was no more than an inch between my knees and her vehicle. I must admit that with enough adrenaline pumping through my body to pick up and toss her vehicle, I used a few words that I would not normally use in public and asked her whether or not she had seen me. She protested that I was in her blind spot, to which I answered that this is the reason as a driver you check your blind spot before whipping out of a parking spot and I questioned whether she should still be allowed to drive. I am now skitterish to even venture into parking lots and Lord help me crossing streets!!

* This week I got up, bathed, dressed, and out of the house four days in a row - Sunday for mother's day, Monday to pick up a prescription, Tuesday to go shopping for warmer weather clothes (last spring/summer I was still skinny from the dysphagia, this year definitely not so much), Wednesday to pick up the remainder of the prescription that they had not bothered to order in time for Monday and to return to my apartment (I had been staying with my mother for about 2 weeks). None of those days except Sunday and Wednesday involved getting up before noon, and those days I got up at about 10:00am. I was back home by 4:00pm every day. Yet my body is making me pay for so much activity. The dysautonomia is having a temper tantrum - I can not maintain my body temperature anywhere near normal, my blood pressure is running lower than my new normal, my GI motility is all messed up. The neurological disease is collecting its toll with headaches, severe muscle pain, and an increase in the dystonia and poor muscle control and balance. We are working out the terms of a peace treaty now, and I am hoping that by next week all will be forgiven especially since Monday I have a Dr appointment to evaluate my legs for Botox treatment as well as an EEG. I highly doubt the EEG will show anything because even if I were to have seizures I am on enough antiseizure medications that it should stop anything fast.

* I realize this post has been neither stunning nor brilliant, nor particularly entertaining. It has been long, if that counts for anything :) I shall work on the next entry and try to achieve brilliance, creativity, stunning humor, and perfect length. Hey, it is good to have goals :) Bonus points to you for making it to the end of this!!!

Yesterday for Easter my brother and his crew (my sister in law, my nephew who is thirteen and thus too cool for everything, my niece who is 11 going on 16, and my niece Little Bit who is blissfully 5 years old) picked me up and we headed up to where my mom lives to all go out to lunch.I took my camera with me but somehow managed to miss pictures of my mom, my brother, and my nephew. I will get them soon!!! We went to Chilis where out group managed to consume what must have been the equivalent of an entire pig's worth of ribs and created the carnivore sundae pictured below.
I was highly impressed by the ability of my unfairly skinny niece and nephew to consume food - my nephew cleared a steak meal and my niece cleared an entire whole rack of ribs. And both got dessert!! Little bit was not far behind them clearing her plate of kids mac and cheese, half her fries, and an ungodly amount of ice cream and some cake from a dessert that could have easily fed four. Afterwords I think we all felt a little full.
Little Bit was just thrilled to show off her Easter dress and insisted that her arms were not cold, nor her bare legs and feet. I was the same way as a kid, so I really can not tease her too much. She is getting so big - not the tiny little baby I took care of for two years!!

I loved this picture so I had to play around with it. I transferred it to black and white with just her Easter dress and Princess Barbie sunglasses left in color. The Princess Barbie sunglasses were a critical part of the outfit as she is SO into princesses and Barbie dolls now. Dora the explorer is losing her glory and Barbie is becoming the best thing on earth. She is growing up!!
On the way home Little Bit was writing and drawing on a note pad and drew the most precious picture for me. I really wish my scanner was not having a temper tantrum right now because I would love to post the picture here. I will try to coax the scanner into working again later, but I think that feature may just be DOA - the printer has been moved from Michigan to Virginia to another house in Virginia and back to Michigan so I don't think it owes me anything. She drew a picture of herself telling me "I love you" and me telling her "I love you too Mallory". Cute, right? But the best part is that she drew me in my wheelchair without any hesitation or fuss, just accepting that it is a part of my life. God I love that kid and I love her view of the world and the way she takes things in, asks questions, and when she is satisfied accepts differences and is good with them. If only adults could learn from kids!!

Today I had a follow up appointment with my regular neurologist. She was thrilled and excited to hear that the specialists at the MDA clinic had been able to give me a working diagnosis that he is confident will be proven through subsequent testing. The focus today was the treatment of the symptoms rather than diagnosis. So we rearranged my medications that are used to treat the spasticity/dystonia in my legs to try to focus in on a combination that works. Really good news - the florinef seems to be working as my BP at the office today was 114/75!!!!! I NEVER see numbers that high!!! If we can get it a little higher and stable, then we may be able to try the Baclofen again - I got great results from the Baclofen but it caused a dangerous drop in blood pressure that led to a tour of the local emergency room when I hit numbers like 78/45 and was none to happy about it. The doctor noted that my endurance and strength have declined - for example I used to be able to stand with my braces or minor support (the counter) to complete a washing of dishes. Now after 2-3 minutes I have to sit back down in my wheelchair because otherwise my legs are going to go out from under me. I used to on a very good day be able to wheel about a mile, now I am lucky if I can wheel a block to the grocery store and library on a very good day. We are going to try to add in a low dose of an ADHD medication to treat the overwhelming fatigue because there are some days when even on a solid dose of narcolepsy medication I sleep until 3 or 4 in the afternoon and I am so exhausted that getting dressed is a massive victory. It is difficult to plan anything because I never know if it will be a day that I have energy or a day that I can barely get up out of bed to lay on the couch. Things that influence my energy include how I slept the night before, if I have any lingering or low level (let alone full out) infection, how the dysautonomia is behaving, and sometimes apparently the flight pattern of a butterfly in Brazil. :) I totally forgot to ask her what my PFT results were, but I am assuming if they were dangerously abnormal I would have been notified. I was also diagnosed as having myoclonus, and in a few weeks have to have an EEG done to make sure there are no signs of seizures and that it is originating in the muscles. On the same day I will be evaluated to determine if I would benefit from Botox injections in my legs, and then they will begin the process of convincing my insurance company that it is medically necessary - you know, that I am not treating wrinkles in my feet for cosmetic reasons. ;) The idea of being able to straighten my toes and get my foot flat again is an amazing concept that seems beyond belief.
Today started out far too early for my brain and body to keep up, but it was worth it because on the way to the appointment my father took me out to breakfast at a little hole-in-the-wall place that had awesome breakfast food. We shared one breakfast and I still could not finish my share!! Through all of this I have really been amazed and so appreciative of how my family has come together and been there for me. Never has my father or stepmother or brother complained about the appointments they have taken me to, about the waiting in waiting rooms, about the long drives (because the best neurologists are over an hour away), about the seemingly endless tests. My mother has been my emotional support, and she has never complained once when I woke her up in the middle of the night (nights are my toughest times) in tears of frustration or when I let it all out on her. Everyone has adapted to having to accommodate my wheelchair and my new limitations without making me feel like I am a burden or that I am making things more difficult for them. I am so blessed.

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 adjusted to using a wheelchair, but there are few moments when it does not register to me as something foreign or imposed upon me. While I appreciate greatly the mobility it offers me, I still have so many fresh and often stinging memories of my independent mobility and my love for being in motion on my own. It does not yet feel like a natural part of me, but rather still like a somewhat awkward contraption of metal and vinyl. Today was different. For a few moments I completely forgot that this was not natural, that this was not how my body has always moved, and I felt free and joyful in motion. We had a family lunch today at a nearby restaurant, but we arrived about 10 minutes too early, as our reservations were for just when the restaurant opened. So I was hanging out in my chair in the parking lot with my family, and as I started wheeling towards the more sheltered area of the building to escape the wind (I had decided to wear a skirt - bad planning), I noticed my wheelchair was acting weird. It was almost skipping when I pushed it. Finally I realized my Dad was walking behind me and stepping on my wheel every time I pushed. Without a thought I spun around and began to chase him around the parking lot. I was racing, I was turning, I was weaving in and out of obstacles and laughing hysterically. He tried to escape by darting between my stepmom's truck and a post, thinking I would not make it through, but I navigated without any problems and almost caught up. Then the wind kicked up when I was facing the wrong direction and my skirt flew up into my face. Good news: I had on thick purple tights so nothing was revealed. Bad news:I had on thick purple tights and my skirt flew up in my face. I could not stop laughing and neither could he. Finally I surrendered and spun on my wheels, tossing my tangled mess of windblown curls with as much attitude as I could muster with my laughter and promising revenge. I swear running over his foot when we went into the restaurant WAS an accident, just a happy coincidental accident. But as I chased him and we laughed in the fall wind, I forgot that the wheelchair was foreign to me, I forgot to hate the fact that I "should" be running, I forgot to long for the free movement I used to know and reveled in the freedom and movement that I captured in my chair. I forgot that I am different, that I am dealing with more medical issues that JAMA, that in just one short year my life has radically changed and I lost myself in the sheer joy of the moment. What used to be did not matter and what may happen was not a worry, and for a moment I forgot it all.

For days or even a week at a time I feel like I have everything under control, or as under control as possible when your body laughs at you when you ask it politely to do something like maintain a core temperature near 98.6 or straighten its toes. Then something happens - something physical, something emotional, something in terms of new worries or diagnoses or symptoms or slaps of realities or crashes from the Dysautonomia and suddenly I realize that I have as much control as Pavlov's dogs. Of course, it does not help that I am perhaps the most stubborn person I have ever encountered and so I may have a small tendency to completely ignore the warning signs that my body gives me that I am pushing it too hard and just keep going because I refuse to allow my body to define who I am or what I do. There is only one problem with that attitude, and that is that in the end my body usually wins with a big meltdown and reminder that I can push but it makes me pay. Then there are the emotions that I try desperately to ignore and just push past. Don't I look good in my self made superhero cape (just ignore the fact that every so often I manage to choke myself with it and don't look to closely or you might see that it is made from patchwork, duct tape, and and illusion)? I don't want to allow this illness to have power over me, so I try to avoid the emotional impact that it has because that is admitting it has the ability to control me in ways I hate losing control. I do not particularly wish to grieve for an entire way of living, for a person that I can never be again, for hopes and dreams that I have to exchange for new hopes and dreams. So I try to dodge those feelings until suddenly I find myself in the midst of more emotions than there are words to describe them. I should buy stock in Kleenex for when this happens. It can be triggered by so many things - a seemingly random small frustration that is just the last thing I can handle, an object that reminds me of a year ago, a date of "the last time I...", a word, a bad day, or apparently the flap of a butterfly's wings in Brazil. The Dysautonomia crashes just frustrate me because I want to be doing things, living as close to a normal life as I can get, and yet my body refuses to cooperate and on those days it is a victory if I migrate from bed to couch where I spend the day curled up and struggling to stay hydrated. On those days the idea of wheeling anywhere seems as impossible as the idea of walking across America. Then there are other stresses like sitting in an apartment full of boxes from my previous life in Virginia, seeing my car parked outside my window packed full of more boxes (a car I can not drive but am still paying for, a car that right now is a daily reminder of my losses and that had to be parked right outside my window because that wouldn't possibly touch a raw nerve or anything), and feeling overwhelmed. Thankfully, I was smart enough to realize I could not do this on my own - the physical act of unpacking when my muscles are in such a rebellion and I am hanging on the edge of a huge Dysautonomia crash, and the emotional act of having to go through the remains of a life I still so desperately miss and crave to regain. So today my Mom is coming to stay with me for a few days to help me get organized, to sort through the boxes and the emotions, and to be the voice that reminds me this is all normal for a very abnormal situation. And all that I can do is my best, and not give in to the frustrations or anger or weariness or grief. All I can do is just keep swimming. I am so blessed to have so many people that I can reach out to when I need someone to listen, someone to understand, someone to pray, someone to be there, someone to physically help me, and someone to remind me that I am not a failure for feeling all of these things but in fact for once in my life absolutely and beautifully normal. So for this week my goal is to just keep swimming and to soak up the love of my friends and family.