Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.

My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!

When I welcome some thing new into my life, it just does not feel right until it has been given a proper name. My computer is named Elphalba after the wicked witch of the west (and I named her correctly!!). My wheelchar is Nessarose, sister of Elphalba who had no arms (my chair has no arms) but could perfectly walk with enchanted slippers. My coffee maker is Klaus,a German in Lederhosen whose speciality is coffee instead of beer and he knows not to talk to me before I have had my coffee. My electric teakettle is Gretel, wife of Klaus the coffee maker, a round and happy Frau who occasionally just has to whistle with joy. My car had a name, like I had a car. Seeing as it is gone we won't bother going there. My ipod is named prism, for through it come music and stories of every color of the rainbow. I have three stuffed animals "Who", "What", and "I don't Know" in tribute to Abbot and Costello. Right now my printer goes by the name "useless pile of scrap metal". I have never named my TV, although my brother named his big screen TV Roxanne and the kids know that if they hurt Roxanne things get ugly - really ugly. So it makes sense that when something moves into my body and sets up shop that I name it too since it is now a part of the crazy thing called me. The spot on my right lung that we have no explanation for but that has never changed is named Bob because I spent a year trying to get someone to at least rescan and it felt like I was always asking "what about Bob"?  My digestive system is named Walter, and it is a very complicated story. But Walter farts can kill. So I have two unnamed additions to my body and that just will not do. One is the pituitary microadenoma that I was taking names for. The other is an assumed lipoma (the scans are unclear) on my left arm that has been there for years but is now growing. So first place in the name that tumor contest goes to Gollum, my hitchhiker in my brain. Second place goes to Peeves, given the honor of being the name of my long term friend in my arm. Prizes will be distributed.

Yesterday I was a very poor representative for those of us who use wheelchairs as I allowed my sarcastic temper to have fun. I was frustrated because I had wasted 45 minutes at the lab because the doctor forgot to mention to me that I needed to be fasting for my vitamin levels to be checked. Then the mall was crowded and apparently they have not heard of air conditioning because I swear it was cooler outside than inside. So my first victim was an older guy that I got stuck behind in traffic heading to Target where I needed to get my 14 prescriptions. He was talking on his cell phone and would suddenly just stop walking, causing me to have to suddenly just stop rolling. When I was finally able to clear him, I pulled up next to him and informed him that suddenly stoping like that could be dangerous for his health and I added in my opinion of his intelligence.
Victim number two was a teenager working at Auntie Annie's pretzles. I should point out I was wearing a white skirt. I ordered a pretzel and a medium drink. She tossed them onto the counter in front of me and gave me my change. I was about to put $5 in the tip jar because I know they work for less than minimum wage because they can receive tips when she just up and walked away. She did not dry off the drink cup, she did not offer me a tray, and she did not offer to carry the items to the table a whole 15 feet from the stand. I muttered loud enough for her to hear "thanks for the help. there goes your tip witch" only I did not use witch. I am bad. It was a bad day. I had just spent $200 on medications and missed the bus by 5 minutes. I dried the cup off with napkins and stuck it between my knees, like I usually carry things when in pants, and balanced the greasy pretzel paper sleeve on my lap as I wheeled over to the table. I was victorious.
Victims number three were a gaggle of older women walking in a long group across the hallway of the mall. I had picked up some good speed because there was a slope downward. As I approached they realized I was not steering away and broke off into two groups. Passing through I announced "score, 7-10 split". 
Victim number four was on the bus. He was blatantly staring as I got on the bus and was being strapped down. It was not your usual look of curiosity but rather "eyes are falling out of the head staring". So I looked at him and said "It's called a wheelchair". Missed opportunity to educate but it felt so good to just stop the staring, living in a fish bowl feeling.
In more positive and fun news I totally messed with the mind of the customer service worker at Payless. Due to scheduling issues I missed my June Botox appointment which means my feet and legs are as tight as can be. Shoes are a challenge and trying to put my braces on is a joke. Well we came up with the idea that ballet slippers would be perfect because they are so soft and giving, and its not like I am walking in them. So I was looking at the different sizes when she came up to me and asked "Can I help you find what you are looking for?" I replied very happily "No thanks, I have found it. I am just debating size." There was a long pause and then she answered with a shakey "Oh, okay. If you need anything just ask." I can not imagine what was going through her mind when a chick in a wheelchair is buying ballet shoes. I never explained and left her perplexed.

I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!

Spring used to be one of my favorite times of year, but now it is bittersweet. I still love the crisp bite as fall snaps back as it recedes (eventually, someday), I love the sudden explosion of green everywhere, I love the brilliant sunshine that emerges after the rain, I love the endless variety of flowers each as if painted by hand. I love how everything is bright and new and alive again. I love to go out in a fresh spring rain and chase puddles to splash just because I can and to twirl in the raindrops falling down with my arms open wide.
The bitter part comes because this was always a particularly active time as a teacher, with IEPs to write and end of the year excitement to plan and the joy of explorations outside for hands on learning, and the delight of seeing how far my kids had come in one school year. We always went on a Bear Hunt for Easter because everything had to be secular, and the kids followed directions of prepositions like over, under, on, around, through to find stashes of small toys until at last we reached "the bear cave" where they creeped in and found a box of bears to choose a special friend from. In May we hatched our own butterflies and watched them grow from egg to caterpillar to butterflies that we eventually set free. I was always amazed that my not so "gentle hands" never killed a butterfly in their eagerness to see them and get to them. We made special mother's day gifts and cards, and father's day too because that came after school ended and I loved being creative with these. We baked cookies, cut up fruit for fruit salad, made invitations and sent them out, decorated the tables, and set them so we could enjoy a Mother's Day tea made and served by the children (with assistance as needed). We planted flowers and watched them grow, each having a day with the important chore of watering and measuring them. There was always out water day when I asked for the kids to be sent to school in swim suits with a change of clothes and we took the huge water table, buckets, a wading pool, and every water toy ever invented out into the hot sun and just splashed until everyone was content. On the last day of school I set up a carnival in our classroom with a pinata, classroom games like bowling and bouncing frogs and pin the tail on the donkey and matching ducks and face painting and lots of balloons and bubbles with prizes at each game and special snacks. Then each id received their goodbye package from me - a framed photo that I had taken of them during the year, a photo CD of all the pictures I took, a new book chosen just for them, bubbles, and a small toy or stuffed animal.
I miss all of those classroom adventures. I miss the wonder of finding a ladybug and the lessons that came naturally from it. I miss the wide eyed wonder watching a butterfly come out of its cocoon. I miss the laughter, the fun of learning, I miss getting good and messy in the name of education. I miss my kids.

Yesterday I experienced one of my more severe, most dreaded Dysautonomic crashes (also known as crises but I prefer the term crash as it is very much like suddenly slamming into a brick wall doing 60 mph and crumpling to the ground). I had simply gone to the pharmacy to pick up three much needed medications and this act resulted in my body being unable to process the input it was receiving and I went from functioning to slamming into that brick wall in about 10 seconds flat. The typical crash goes like this - my blood pressure peers over the edge, contemplates the alternatives, and then plummets. It is secretively a sadomasichistic entity that loves to torture itself and the body in which it dwells by climbing peaks and throwing itself off of them, never knowing where it will land. I develop a headache that makes my migraines look appealing and that is impervious to pain medicine. Laying absolutely flat - no pillows, no incline at all- in a pitch dark room and not moving a muscle can take a little of the edge off of the headache. I am dizzy and if I try to move into an upright position frequently tap dance very close to passing out. Nausea follows the headache, and last night I ended up vomiting. Impressively, I vomited in the dark into a trash bag lined garbage can and did not miss a drop - nothing on the bed, nothing on me. I am a professional. My heart rate does weird things during these crashes and it frequently alternates between skipping beats and throwing extra ones in for the fun of it. This started at about 4pm yesterday and the fun did not end until sometime around 6am. I finally fell asleep around 3:30am after being able to slip some meds into my stomach and convincing it to keep them down, but at that point I still had the massive headache.
Today I am in the "hangover" phase in which it feels very much like I have done 10 rounds in a boxing ring, then gotten run over by a semi truck as I crawled home. I slept basically all day today as my body tried to reset itself, and I have been having to try to push fluids to make up all the ones I lost out on. If I am going to feel this hungover, I at least want the night of drinking before hand and the embarrassing stories to go along with it. Preferrably with pictures and or video. I have never even been near drunk, but I know what a hangover must feel like, including the little man who pranced in a field of manure and then danced a jig in my mouth while I slept last night. Evil little creature!  The frustrating thing is that, while I can avoid known triggers of these crashes, they still happen out of nowhere and slam me hard and fast and viciously. All that seeking ER treatment would do would establish IV fluids, there is no other treatment plan for these crashes as any medication administered has a risk of triggering another extreme reaction. I do have access to zofran, pain medication, and reglan at home but they only do so much. This is a part of living with Dysautonomia that few people see, that few people understand, and that does not neatly fit on a checklist of daily living skills for assessment.

According to the government of this great country, I do not qualify as being disabled. I have been denied Social Security Disability and now must begin the oh so fun process of appealing. Looking at my alphabet soup of medical conditions and the severity of the dysautonomia and dystonia I would really hate to see how ill they would like me to be for me to qualify on the first go round. I am working with a company that deals with Social Security Disability, courtesy of my Long Term Insurance company, and so today we began the additional reams of paperwork over the phone. I think I am now responsible for killing an entire acre of the Amazon Rainforest for all of the paperwork completed. My medical records may be responsible for half of the deforestation. So as she is asking me questions we have the following conversation.
Her: Could you do your previous job today?
Me: **Laughter** Oh wait, you are serious? Lets see, I can't hold my arms over my head to blow dry my hair but sure I can pick up and position children weighing 50+ pounds. It was full contact teaching, not sitting at a desk and reading aloud to students.
Her: Could you work for 8 hours?
Me: **Laughter** In one day? Or across a week? There are days my blood pressure is so low I can not sit upright, and I take two strong antinarcoleptic medications and still sleep 16+ hours a day most days. Plus I don't have the ability to sit upright that long without severe pain.
Her: If you could work would you?
Me: **Indignant snort** Do you really think that at 29 I would rather spend most of my days stuck in this house or doing the job that I got the best education in the world to prepare for and loved more than anything?

I think one big issue with my application  is that even with all of the diagnositc testing and specialists we have yet to arrive at a clear cut diagnosis. We can diagnose the symptoms, we can treat symptoms, but we can not identify the main disease or disorder that is causing all of the damage. It is believed to be something genetic but beyond that we have eliminated but not identified.

My biggest fear, or concern, is that I had been praying to qualify for Medicare before my COBRA insurance coverage runs out. Michigan is a "skip state" which means something like we skip the first appeal and go straight to the second and more comprehensive appeal. This translates to a process that generally takes 7-34 months. Without access to health insurance, it will be a mute point to determine if I am disabled or not. I am holding on as hard as I can to God's promise to provide for all of our needs in His perfect timing.

Unlike the world's cutest now eight year old pictured above, I can only fall asleep sitting up on the rarest of occasions. In fact, tonight I can not sleep period. I feel like a character in a bad Dr. Seuss book on sleep.
"I can not got to sleep tonight
My sleeping thing is just not right.
I could not, would not in the bed
Not with a fancy pillow for my head
I could not, would not on the couch
That left me feeling like a grouch
I could not, would not on the floor
I can't get down there anymore
I could not, would not with my iPod
Not even after I politely asked God
I could not, would not with a guy
Well only cause none showed up for me to try
I could not, would not count the sheep
They went on strike with Little Bo Peep
I could not, would not with the prescription drugs
At maximum dosage I am not even buzzed
I just can not go to sleep tonight
And by now I am quite a fright
Please sleep let me try you out for a while
Insomnia is not my style!"

As if bad rhyming ala Dr. Seuss was not enough, you now get the priceless opportunity to read whatever comes floatng from the muck and the mire to the front of my addled brain and out my fingers. I probably should not have internet access when dealing with insomnia!


Randomimity

* I actually had to speak the phrase "Excuse me ma'am but could you please retrieve your dog from my leg" this week in the elevator. Apparently her dog did not have a banana in his pocket but was in fact very excited to see me and hopped right up on my foot rests and decided my leg made a hot afternoon date. I just thank God it was a miniature something and not a Great Dane!

* When picking up prescriptions at the pharmacy, the pharmacy tech sees me and automatically goes over to the spot for my last name and searches through it. We hit the motherload as he returned with a sack of meds. The sad part was when he asked me if ten sounded right for the number of prescriptions, not only did I have no idea if that was correct (God Bless Automatic Refills) but I also knew I would be back in a week or so for more.

*According to Social Security I am not considered Disabled. This sucks Ostrich Eggs and means we have to go through an appeal. It also makes me wonder how much more screwed up I need to be to qualify! I honestly think the problem is the lack of a cut and dry diagnosis. That and they are all could use some preparation H in a jumbo tub.

* While at the mall last week, I politely informed a man who kept stepping in front of me that I would not hesitate to run him over. He said I needed a horn, to which I replied he needed a rearview mirror to check before lane changes.

* I am such a total geek/nerd. With the iTunes gift cards I received for Christmas I have been downloading documentaries that I never get to see in a theater because I live in The Middle of Nowhere, Michigan. Just like I prefer nonfiction books to fiction books, I prefer documentaries to regular movies.

* I scared and confused the crap out of a small child while shopping at the mall. There was an item hanging from a high rack that I wanted and no one anywhere to be found willing to help me. However, there was a child about three or four years old staring at me intently from the child seat of a shopping cart. So I did my "Amazing Standing Cripple" act and unbuckled my feet, undid my seatbelt and held on to the rack while I stood up long enough to grab what I needed. When I looked over at the poor child she had a look of pure confusion and shock on her tiny features that in all honesty was hilarious to me. I want to hear how her mommy explained that one to her!

Christmas is usually one of my favorite times of year, with the glittering lights and the decorations and the excitement about giving to others and the celebration of Christ's birth. This year, not so much. I am definitely not feeling the Christmas Spirit. Last year I was all about everything holiday because the year before I had been so sick that I missed out on the entire holiday season - every holiday from Halloween to Valentine's day. This year I am at a different point in dealing with the massive changes in my life - if we were to refer to the Kubler Ross stages of grieving I am alternating between angry and depressed with days of acceptance. I really want my old life back - if that could arrive under my Christmas tree neatly wrapped in a package and tied with a bow I would be the happiest person on Earth come Christmas morning. At first I tried to force myself to go through the motions and engage in the traditions and make myself feel happy whether I wanted to or not. Yeah, that went as well as it sounds. So now I have given myself permission to feel however I feel and not feel ashamed or guilty about it. There will be no homemade christmas cards this year, and it is debatable whether I will send out any Christmas cards. I have not listened to a single Christmas Carol, other than those playing in stores, and I may choose to keep it that way or I may rock out to Sugarland's Gold and Green. I am putting up a small Christmas tree this year but it will be a low jey event and that will be about the extent of the decorations. It is going to be a low key, low pressure, take it as it comes, celebrate the things that really matter Christmas. And this year I am okay with that.

As a small child I was hypersensitive to the tags in my clothing. My mother had to painstakingly remove every last reminant of any tag from every single item of clothing before I would agree to wear it. I would hear her grumbling as she picked at seams with sewing scissors after every back to school shopping excursion. But those tags in something new were intolerable to me, I could continually feel them grating against my fragile skin and what to many would be a light touch was magnified to torture. Yet in old hand-me-down clothes that had been through the washer countless times and the tags had been softened with age I did not demand that every tag be removed because they had been softened with time. They were tolerable because they were in something broken in, something that had taken the abuse of the world and worn away the hard edges. It took time for the raw scraping to transfer to a soft and gentle touch; time and wear and use.

I realize after reading comments to my last post that it may come across that I have a huge chip on my shoulder or extremely high expectations when it comes to how others act towards me in relation to my disability. Using a wheelchair, using leg braces, not being able to walk independently - those are all brand new tags in my life. After two years they are not as intolerable as they were in the beginning but they are still no where near as soft and flexible and gentle as the other tags in my life that I have lived with for so much longer. I admit that it stings more when I feel someone react to my using a wheelchair because that tag is still grating on me. I use humor as a huge coping mechanism, and that is why I frequently just laugh at the situations that feel awkward or out of place. I also know that because these tags are not worn soft with time, I need to keep in my heart and mind the fact that most people have good intentions and just generally have limited experience with individuals with different abilities.

But I do also hold society to a high standard, because if we do not have high expectations than nothing will ever change. I will gladly educate and advocate. The inclusion of individuals with disabilities in our mainstream society has come so far, but has so very far to go. Ignorance is not an excuse, as it was not an excuse during the Civil Rights movement, but an opportunity to educate. Sometimes I need to remember that it is an opportunity to educate and ignore the rubbing of the tags. Ignorance is a tag that rubs raw, but it is one that is only softened by education and by teaching those who "don't know any better". It is showing the world what it means, and does not mean, to have a disability. It is working to create a world where having a disability is not equal to having a handicap*.

I hope this post makes sense. I tried so hard to explain what is on my heart in a manner that would be easier to understand.

* A disability is a difference of abilities as compared to a norm. A handicap is when a difference prevents the individual from being able to engage in a desired aspect of society. So it is possible to have a disability but not a handicap, and technically to have a handicap without a disabilty. In the game of wheelchair basketball, being ambulatory is a handicap because you are not used to using a wheelchair and you will struggle to keep up and not end up as roadkill.

I couldn't sleep - probably something to do with the two, 2.5 hour naps I took today- so I decided to do a round up of some of the best of human stupidity that I have encountered recently.

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At the Target Pharmacy counter a woman has spread a dress in a dry cleaning bag, a Victoria Secret bag, a Bath and Body works bag, and her purse. I am waiting patiently behind her to pick up my prescriptions as she pays for her meds and gathers up her stuff. Then we have the following conversation:

Her: Oh, I am so sorry, I am completely in your way!
Me: Don't worry about it. I am usually the one getting in other people's way, its a gift, so I totally understand.
Her: Oh yeah, because of your wheelchair.

Excuse me? Does she want some Ketchup to go on that foot sandwich? Did she just tell me that I get in the way because of my wheelchair?

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I called the local bus company to schedule a special handicap accessible bus for direct transportation.

Bus Operator: Are you in a wheelchair?
Me: Yes, I use a wheelchair.
Bus Operator: Do you have a disability?
Me: Nope, the wheelchair is just a fashion accessory.

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I had to complete a urine analysis for a bladder infection that is refusing to die. After giving me the very familiar cup to pee in, I had the weirdest exchange with the lab technician.

Tech "Okay so how do you want me to help you?"
Me "Uh, thanks but this is definitely a one person job. I have it under control."

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Riding on the bus I had noticed an older woman staring at me, but I figured if she had nothing better to do with her time then she was welcome to stare. My legs were hurting after having been strapped in for a few hours, so I leaned down and unbuckled my foot restraints (I am not wearing braces at this time as they are in the process of being made) and allowed my feet to rotate into their natural position. As my legs and feet moved I heard a gasp from the old woman and looked over to see her turning eight shades of white. Apparently she had assumed my legs did not move and so when they moved it startled her meddling little heart half to death.

*******************************************

Again on the bus, I had the following exchange with the driver.

Driver: "You, the wheelchair, where are you going?"
Me: "You, the legs and loafers, I am going to X."

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These are just the highlights that I can remember. It is a dangerous world out there, and apparently I bring out the stupid in people. :)

This time of year seems to be a very melancholy, introspective one for me. Last year I thought it was because it was full of all of the first "last times" - a year since I taught my kids, a year since I got sick, a year since I was able to hike, a year since I walked independently, a year since I became dependent on a wheelchair, a year since I lost so much. Apparently those anniversaries are just as powerful the second year as the first because I started to get into a funk as October began, and it was the beginning of October when I really started getting sick two years ago. I feel the old emotions creeping back in - the frustration, the anger at my body for betraying me when I had everything I had ever wanted in life (a job teaching special education, awesome friends, and was ironically the healthiest I had ever been before this happened with hiking and teaching all day and doing yoga), the aching longing to have all of the unanswered questions answered and to give this monster a name so I can call it out into the light, the grief for what I lost. Now it sounds like I am sitting around feeling sorry for myself and that is absolutely not the case, but when I least expect it I find these old feelings creeping around again when I thought they were long gone. I guess there is a season to everything and this is my season to mourn. Soon enough it will be my season to dance and celebrate and be joyful. Even in the mourning I am thankful, for in order to feel loss I had to have had some incredible experiences and opportunities and I am forever thankful for them and for the life I have been given. Considering I was never supposed to live beyond my first birthday, every day is borrowed bonus time.
I have another entry that I want to write soon, but this is what came out when I sat down to type so I am going to go with it for tonight and save the other for another day this week. This is more real to what I am experiencing now, a real image of the fact that there are still seasons of mourning two years out and probably ten or twenty years out just as there are seasons of celebration and seasons of joy and season of dancing.

* photo courtesy of iStock Photo

Yesterday I had to go back to the "big" shopping mall in the "big" town where my mom lives because I needed to have more prescriptions transferred and the pharmacy I use is in a store attached to the mall. I use public transportation to get to and from the mall, so I can be independent in getting to not just the mall but anywhere in this town which is a nice bonus. The above picture is of my treat that I earned after having to spend over an hour negotiating between two pharmacies and one insurance company to get a prescription filled. Thankfully, butterscotch frozen yogurt with chocolate topping is not a solid food and does not cause me to choke so I can enjoy this delightful treat - and as a bonus the yogurt is fat free, low sugar and the chocolate simply does not count.
It has been hotter than should be legally allowed, so yesterday I decided to bust out the full summer gear and I wore a skirt with a tank top and sandals. My AFOs were left at home in the air conditioning. A very nice stranger complemented me on my purple camouflage skirt and I had to laugh. I had never thought of the pattern that way, but it is pretty descriptive. It has artistic blotches of beige and pink and purple and white and navy blue on it, so I guess camouflage works to describe it.....for when I go to those girly post combat parties?
The mall is crazy, especially on a Saturday, so I wanted to include a picture of my typical view as I try to maneuver through the aisles and hallways.

My wheelchair is at butt height, which has benefits and drawbacks depending on the situation. ;) It also means that if you refuse to get out of my way after plenty of notice my foot rests are at a nice shin height.

I went in to use the restroom and there was a staff member doing a quick cleaning job of the bathroom. She went into the handicap accessible stall and then came back out and, well she let the stupid fall out of her mouth. She asked me "Do you need to use this stall?" I replied "Well, I pretty much have to seeing as I can't fit in the others.". Um, duh?
I am finding that some of the foods I am now stuck eating really are not that bad. I really actually like the infant oatmeal, and a brand of apple yogurt oatmeal that comes in a jar, and a microwave meal of macaroni and cheese and carrots (the noodles are so soft they melt as you eat). I tried a veggie one with zucchini, carrots, and some other veggies and heated up it tasted like a soup so I have more of the meat and veggie ones to try and eat as soups to get more protein and veggies. I had to throw away the freeze dried bits of fruit that they sell for babies as they were too solid for me and I choked. Choking is not on my list of things to do today, or any day. I also discovered that I can mix muffins with milk and make a concoction that is smooth enough to eat and really still yummy.
In a testimony to the cognitive changes of this delightful neurological disease, I have been so very carefully using a program on my iPod as a checkbook. Something told me to compare my available balance between my checkbook program and the bank. There is a $500 difference, not in my favor, and I have spent an hour looking over the transactions online and can not figure out where I screwed up. Thankfully I had some money left in savings that I transferred to my regular account and my mom is going to help me, and I have paid for the most expensive prescriptions already, but damn. How do you make a $500 mistake and not even be able to figure it out????

Some days my SuperWoman Cape gets tattered and torn, and I don't have time to mend it.
Some days I am Wonderwoman and can take on anything life throws at me.
Some days I sleep with a pink fuzzy owl named Who or a pink plaid porcupine named What.
Some days I am filled with enough courage to face monsters in real life as well as dreams solo.
Some days there is not enough coffee in the world.
Some days I am filled with a need, a drive to live, to do, to be, to create, to capture the moment.
Some days I laugh until my ribs hurt and I can't catch my breath.
Some days I invent new and creative combinations of swear words.
Some days I blast my iPod and get lost in the movement and the freedom of the music.
Some days I can not concentrate long enough to read a few pages of a book.
Some days I pour my heart out on a page in poetry, my soul in ink.
Some days I am a tight knot of emotions I can not manage to untangle or untie.
Some days I use humor to alleviate the discomfort of those around me.
Some days I use humor to cut at the stereotypes and ignorance of those around me.
Some days I am close to content, to making peace.
Some days I rage at God, I am angry with the world, I am bitter and broken.
Some days I am able to laugh at the ignorance of the population.
Some days I am tired of having to educate an entire society.
Some days I am tired of being seen as a wheelchair first and a person second.
Some days I want to try and fail rather than never try at all.
Some days I love to watch the sun pull down nights curtain and the stars emerge.
Some days I am just waiting for another chance tomorrow.
Some days I want to discover that I have wings and take flight above this mess of life.
Some days I am afraid of failing, of falling, of believing in an illusion.
Some days I see a whole and strong person when I catch my reflection in the mirror.
Some days I see nothing but damaged goods and failures in the same reflection.
Some days I stand before Jesus with my arms open wide, praising Him and rejoicing.
Some days I crawl upon my knees before him barely able to choke out a prayer.
Yet every day I am blessed, I am wealthy beyond measure, I am thankful for the abundance
Every day I wake to a new sunrise, a new hope, to faith and to the promise of a day.

Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down

No dreams of front porches with wooden rocking chairs
To while away the hours of an autumn in a life
No illusions of grandchildren gathered round and drawing near
To listen to stories of way back when and years ago

No dreams of newborn nurseries with wooden rocking chairs
To gently soothe the restless hours of spring in a life
No illusions of children gathered round and drawing near
To listen to favorite bedtime stories just one more time

No dreams of a world without the presence of a wheelchair
To make accessible the fragile summertime of a life
No illusions of replacing those old hiking boots
To draw nearer to God in his creation once again

No dreams of a world with seamless, endless guarantees
To string days upon days without illness, without winters end
No illusions of youths invincibility, immortality
To draw bravado and contentment with simply being alive

No old dreams remain, those dreams from before
To hold on to them is to grasp at a wisp of a ghost

No illusions of promises but no fear of tomorrow

To live life with passion, to create no regrets

"He that conceals his grief finds no remedy for it." Turkish proverb
"Give sorrow words. The grief that does not speak whispers the o'er fraught heart, and bids it break" William Shakespeare
"If you suppress grief too much it can well redouble." Moliere
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love." Hilary Stanton Zunin
"There is no grief like grief that does not speak." Henry Wadsworth Longfellow

This is going to be a heart-wide-open, raw and vulnerable entry; there will be no attempts made to dress up my emotions in their Sunday best and tie pretty ribbons around the truth nor is it dressed in rags for dramatic effect. It is real, it is pure, and it is honest.
Lately I have been dealing with a grief I have never experienced before, and a grief that is difficult to process or explain to others. I hurt deeply, ache as though my heart may fall apart, have times of feeling bitter anger, and at times am sadly resigned to the situation. I am mourning the loss of so much of my life, the things that brought me such joy and defined who I was as a person and shaped my existence, and the loss of countless dreams that are now forever out of reach. It is not just a loss of what was but a loss of what could have been, a loss of the past as well as the future. In many ways I feel like some part of me has died. I go on with my life, I have good days and days of laughter and treasured memories, but something is achingly absent like a part of me has been cauterized. I don't want that old self to die, I don't want to surrender those old dreams, I don't want to admit defeat and have to allow this to change my life forever when I was so blessedly happy before. For the past 18 months I was able to lie to myself and hold on to the illusion that there was still some chance that there would be a treatable, curable diagnosis identified and I would be able to resume the life I had been living as if it had just been put on pause for a while. Now that I have a diagnosis of Mitochondrial Disease, I have to accept that there is not only no cure but no treatment. That this is a progressive disorder which may continue to steal away parts of my life, continue to rob me of dreams, continue to deny me of aspects of life that I use to define myself. If I did not live my life full out, living in every moment, living with no regrets, living at 100% with passion I would not have so much to grieve, but then I would not have so much love in my life either. It hurts more because I live more, I push boundaries, I defy expectations and definitions, I play by my own rules and love openly - love life, love others, love God.
Yet I mourn so many losses. I mourn the loss of my independence, for I have always been fiercely and proudly independent. I miss being able to just decide to go somewhere, to go exploring or on a short day adventure and not be limited to the ability of others to transport me. I mourn the loss of my physical abilities. I will never again chase after my niece and scoop her up in my arms as she squeals in laughter. My feet will never feel the rocky ground beneath them as I hike up the side of a large hill, using my arms to pull myself upward. Kneeling on a tiled floor I will never again guide the feet of a child as they take their first tentative steps. I mourn the loss of many of the things that brought me great joy and served as ways by which I defined myself - my work as a teacher and a volunteer, my passion for photography (it is much harder to access places to photograph and the angle is different in a wheelchair), my love for nature and hiking and exploring. I mourn the dreams lost, large and small. Dreams of ever being allowed to provide foster care or adopt children (I long ago understood that I can not risk having children of my own), dreams of hiking parts of the Appalachian trail, dreams of missions trips, dreams of dancing someday at my wedding, dreams of classrooms full of children.
I recognize that I can, and am, creating new dreams and a new sense of self but for now I am still mourning what I lost. The wound where it was ripped away is still too tender and too fresh to withstand the abuses of life without pain. It takes time, it takes patience, it takes growth of those new dreams and that new hope, and it takes acceptance of the grief.

I remember at one point not all that long ago having this mysterious substance called energy. I think I got a hole in my fuel tank because energy is a very rare commodity. Today my BIG, HUGE accomplishment was getting dressed and going to the store Right Next To my apartment building. It is so close I can see the back of the store from my window. I managed to roll there, with a stop to rest once I got inside the store, and get basics to stock my cupboards and fridge for the next few days. Coming home was easier because the rear driveway of the store is a HUGE slant, and the very best part of the exhausting trip. I perch at the top of what is basically a launching ramp and check carefully for traffic on the side street at the bottom. Thankfully this is small town Michigan, so traffic is rare and I can spot any vehicles easily. Then I eek my chair out over the edge of the driveway and throw my arms up in the air. At the bottom of the downward trajectory is a double bump of curb and pothole that adds some serious air time. I usually come to a stop somewhere in the middle of the road, although I have made it completely across the road before. This feat scares the dust out of the mainly elderly population that happens to witness it. So, anyway, by the time I arrived home I had used all of today's supply of energy and more than likely a good share of tomorrow's. There are many dishes in the sink waiting to be washed, and the floors need to be vacuumed and mopped (hint, that takes many days to accomplish and I may be seeking assistance with that as it eats up about a week of energy), and I am too tired to do anything about it. Not sleepy tired - although I did crash with some weird system errors earlier (I was violently shivering, freezing cold, every muscle hurt, and I was groggy) and took a nap then- but physically exhausted to the point that I can feel the weight of my eyelashes tired.
Here is a good example of tired. My blood sugar crashed this evening, and I was in the kitchen fumbling to mix up a protein powder that I keep for when I don't feel good enough to eat. I was having trouble opening the new milk jug, so I placed the half gallon container between my knees (now would be a good time to point out that my knees rotate inward with spasticity) to hold it and then firmly twisted the lid. Apparently my knees were applying significant force to the jug because I created a milk fountain. After a few choice and creative curse words, I looked at the large puddle on the floor and looked at my pajama pants which were already wet. I then stripped off my pajama pants and tossed them on top of the milk puddle and let them soak up the mess. I was too tired to go get a towel, or to dig under the sink for a roll of paper towels. I was then too tired and shaky to go get new pajamas, so I wore nothing but a t-shirt until the next time I went into my bedroom for medicine and then I snagged a dry pair of pants. The shakiness is gone thanks to the milk protein drink, and my soaked pajama pants are spending the night in the bathtub until laundry day tomorrow when I will pay a little extra to the wonderful woman who does my laundry for having to deal with stale milk smelling pajamas.
My BIG goal for tomorrow? I am running out of dishes, so I think I need to wash at least a few of those so I have some plates and bowls to eat from.

I am sleepy as I write this, so the odds of it making any sense at all are at best 50/50. :) Make your wagers now! This photograph is of the image on my new favorite T shirt from Zazzle. I may rely upon a wheelchair for mobility, but I still have attitude. For a while now I have been feeling like my life is stuck in this sick and twisted version of the movie Groundhog Day where each day is a repetition of the day before and there is no escape. I thrive on having to think, to problem solve, to be creative, to engage and interact, to create new ways that have never been tried before, to celebrate successes that to the outside world seem insignificant but to the world in which my heart dwells are achievements akin to climbing Mt. Everest backwards while blindfolded. For too many months my life has been on hold. I have been in a stagnant holding position, a medical limbo, a place of existing but not living my life to the fullest. That is not me. I need to live my life and live it out loud, to live it to the limits, to live with passion and pursuing the gifts I have been given and the marvel of truly being alive. I can either wait in this holding position to die, be that at age 35 or 75, and just wander through the intermittent time, or I can take control back in my life and live every single moment that I have no matter what life throws at me. I will rebel against this disorder that continually whispers "you can't" "you lost", "that is impossible" and throw in its face all that I can do, all that is not lost, all that is possible. I will chase my dreams, even if those dreams have been changed slightly, and I will not remain stagnant any longer. It will take time to get a plan of action in motion, but I am beginning the process. I am breaking free of the hold that this has had on my life and declaring that I will live my life boldly, unabashedly, in faith and mercy, and refusing to sacrifice a moment. I must create something powerful, something beautiful, something of change and impact from this situation. I must choose to live instead of just being alive. In the future I see myself returning to college to pursue a Master's Degree, regaining my independence so I no longer feel trapped by relying on others for my access to the world, and reclaiming the passions in my life. I, and only I, will define who I am and what I am capable of, and my life will be limited only by my ability to imagine and to believe and to create adaptations as needed.
If this sounds dramatic, I apologize but this past week has been rough emotionally. This was a break through to realize that life will not be like this forever and that I can change so much of my reality. This life is mine to life, or mine to surrender. I am a rebel with a cause again!
P.S. Please let me know if this does not make any sense and I will rewrite it when I am more awake. I am very groggy and sleepy but wanted to write this tonight.