It's Like Riding a Bike

There are so many things we do throughout the day that we never give a second thought. We don't listen to the inner workings of our shell and all the parts than need to collaboratively work to achieve one simple motion.  My fingers while I type, my hands while they draw, my feet as they take a step, my fingers to scratch my nose, my neck that supports my head as I hold it up to look at the screen OR my body when it wants to go on a bike ride on this most, most beautiful sunny day.  

We search for these "big" things. These miraculous entities beyond us--the galaxies we want to explore that pull in our attention, the miracles we desire to see, the pondering of philosophy and culture. 

Curiosity for all these mentioned are necessary, but I wonder if we take notice of the closest thing to us that is beyond miraculous.  It is inside us. Something every one of us on earth share and have in common. The complexity of the body. The complexity of mobility.  The complexity of memory. All of it. It is amazing in its seeming simplicity, and yet its simplicity slips away from me.

It takes 26 muscles to smile, 62 muscles to frown, 34 muscles to move my finger, 200 muscles to take a step.

As I travel through this, I learn, adapt and in a way my body morphs into something new, and successfully makes it to the next round.

But this doesn't mean I don't miss what I have lost. I miss bike riding. I miss the feeling of the wind in my face while I pedal my feet. I miss running so very much. I sometimes try to recapture the memory of it, but every year it becomes more and more of a foreign concept.  It runs further from me.  When I watch people riding a bike it baffles me.  It has been so long since I have rode a bike and as time passes the concept of riding one is something I can't even realize.

My body does not work this way. It has been reprogrammed. It seems like I should be able to hop on a bike, just like I should be able to lift my leg to ascend a single step, but my body is a road block the size of a rhinoceros. 

I am taken back to my childhood. I literally remember the day when I learned how to ride a bike without training wheels.  

I remember practicing in the driveway all day, and when my dad thought it was safe enough to leave me alone he went into the house, because he had already been at it for hours. But, I stayed outside. I wanted to keep up my momentum and do better. I circled that driveway trying to stay on my bike for a few consecutive minutes.  The sun was setting. The gentle breeze on my face. The neighborhood was quiet, and it was just me and my bike. I remember that bike vividly. 

It was banana seat bike, of course, with colored streamers hanging from the handlebars.  Orange reflectors that at one time I had broke, so I lied and blamed a random fictitious stranger and said he came from the street, slapped two bricks on my bike, broke them and then ran away.  

I was a creative liar, as all kids are. 

I practiced and practiced until my body memorized the steps. It required balance, it required careful thought, pedaling, steering until the point where I no longer had to give it another thought. I was doing it. I was riding my bike and I felt accomplished. I was hooked, and the next morning I couldn't wait to run out so I could revel in my new found "skill". But before achieving this, I remember how confusing riding a bike seemed was. And, I am taken a back -- to that time as a child, because as a 31 year old adult I am now confused again.  \Riding a bike now is beyond my capacity to think of, but still fresh enough in my memory that I miss it so. I suppose in years to come this will be how I feel about walking.  

I mean, I miss walking "normally" now, but I can still experience a step, step, step.  Running is the same for me. I can't even imagine the whole process of running. After all, my body used to do that for me, but now it has failed me. The body is something that is never reliable, so "you" have to be the reliable for yourself.  It is these simple pleasures that I miss and the continuing loss of these simple pleasures that steal from me.

I've realized I am attracted to people who really use their body, or really, those that use their potential and passion.  

It is important. We think it (mobility) is a right when merely it is a pleasure...a gift...a fleeting one.  Use what you can, and not out of fear of the loss of it or out of pity for those that can't, but because it really is wonderful.  It really is a wonder to move. Inspiration is one thing, but action is a whole different level. If you feel inspired do until "it's like riding a bike".  It is good to feel inspired, but fleeting inspiration is just a desert.  If you never exercise inspiration into change, then it just withers and wastes, like the muscles inside of my body.  

Weekend Repose

Not much to report for this weekend. I pretty much cooked, did work and errands...hmmm, déjà vu from last weekend?  

Just for fun, I am attempting to cook a new dish every weekend. Ever since we visited Thailand last year, I have been wanting to take a crack at cooking some homemade Thai food.  So, I finally did.

This weekend I made some Panang Curry and Som Tam, spicy green papaya salad.  I would say it turned out well and I got it to taste like it would at a restaurant. 

On Saturday night I was all excited to cook, because it was a new challenge. I love anything new that stretches me. Jason sometimes doesn't understand why I love to cook so much and often times, out of concern for my energy, he urges me to be less ambitious or limit myself to one dish. I tell him cooking is my solace, and I want to enjoy it to the best of my ability. Yes, it does require a bit more energy than the average person, but I can still do it.  It is my equivalent to going for a run, for a drive, on a walk, riding a bike...but since these are no longer an option for me I put my energy into other avenues. When I cook it is my time to completely tune out life, start and finish a project, be creative and run purely on my instincts all within a short period of time.  Besides, the advantage of cooking is there is always an immediate receiver that benefits from the project.

Not to be fearful or scared of what will happen in my future, but I sometimes think how much I would adore cooking with my future children...that and running with them while they play soccer or learn to ride their bike for the first time.  

This would be important to me.  I want to teach them so much.  With everything they do I desire for them to go above and beyond the required, and have passion for the areas in life that they deem value for their efforts to rest in. Down the road I might not be able to cook for 20 people anymore or chop my own vegetables or perhaps even move my own fingers, but at least I can teach them to love.  Love what you do and never do anything unless you plan on giving it your 100% in people, in ventures, in aspirations.  Always be curious, always be loving and fear is ok as long as you can move beyond it. Despite it. 

If you notice in the picture there is a black chair. On my really bad days I use this to help me shuffle around the house. Yes, yes I need to get a walker. That is in process. I was recently thinking on how I could increase my coolness and obviously a rollator came instantly to mind. All I need to do is wear old lady sweaters and mutter to myself and I could fit in the senior community center down the street. Oh wait, I already DO wear old lady sweaters and mutter to myself...hmmm.  

Well, I need to get back to work.

Paper Kam

After I drew "In Pieces"I had this idea, "Paper Kam".  Today, I was trying to move a stool and my hand was not cooperating. Felt pretty weak. 

"My hands, fingers, legs feel about as useful as scotch taping strips of paper to my body." I thought.

In Pieces

This is how I feel most of the time...more often than not. Each segment of my body feels like its own entity.  Separate.  My body does not feel like a whole person. 

This morning stimulated this drawing.  Had such a difficult morning.  I want to keep this post short, so won't really go into it, but something I could do 5 days ago is suddenly unbelievably difficult.  It comes and goes.  It frustrates me beyond belief.  I feel like I am dragging around a corpse.  In those difficult moments I am in pieces in every way.

"I could do this yesterday, what is the problem today?"  

Every single limb and joint feels detached. I feel everything that is happening in my body and there is no fluidity.  My elbows, neck, shoulders, each finger joint, toe joints and even my butt muscles are getting so much weaker. I feel like everything is aching to die, and 'they' keep asking me, "Why do you fight us? Just let us go."  

Sometimes, I want to. Let go.  

Since every HIBM patient progresses at different rates, though we all have very similar scenarios and difficulties. I've also realized that we have some unique symptoms. Because of the way we have to compensate and "get creative" with dragging our limbs around just to get through the day, we also form little pains and problems in different areas that are not HIBM related.  

My friend, an hibm patient, says her back is curving inward. I am not sure why. MY joints ache so much. I can feel every real estate of my body and it feels like it is crying out to me all day long, whether it is severe weakness, discomfort, tingling, pain, poking, probing, stiffness, soreness, numbness, tightness, extreme weakness...oh, did I already say weakness? Well, that one deserves a few round of applauses.

When those more than usual moments of weakness pop up, so does the question, "Can you do this?"  My body asks me. I ask me. When I get into those situations that require everything in me to complete -- whether it is moving my leg a speck to the right with my hand, standing up out of my chair, turning a door knob, taking a single step, but can't--I whimper, I grunt, I plead, I sweat, I clench, I hold my stomach in tight, I pray to anything and everything that will listen, use my "good luck charm sayings", and I draw every piece of strength I have in order to complete a single ant sized task.  

And then

AND then

I have to consciously make the decision, a decision that is made several times throughout the day, "Yes, Yes, I can do this" I put together the pieces and move on. That is all we can do. That is all I can do.  There are no magical answers and there is no definitive way to handle it.  

Don't worry about me, though. I know this illustration is a little more "serious", but I am ok. 

Highwire

A Thin Line. This is my current stage. Sometimes I feel like I am walking a very thin line between walking and not walking. I am being pulled in by the waves of the inevitable, and my next (major) milestone is drawing nearer. Sometimes it makes me sad but I have to maintain balance, not only with my physical shell, but on the inside.

Weekend

I'm sitting at my desk doing some work before Monday begins, and Jason is playing Wii's Super Mario 2. He is very happy. Like a little kid. Pippi is knocked out cold and laying right next to him.  

I am feeling pretty good and motivated. I can do this :). This weekend was pretty low key. We achieved necessary errands and I did a bit of cooking. I made a batch of homemade pizza sauce and then homemade pizza right afterwards.  Jason thinks I am insane, but I sort of de-seed my tomatoes to prevent bitterness in the sauce. I love the way my fingers feel between the tomatoes' skin and the way the pulp surrounds them. What a great feeling. The other day I had some DakJuk and wanted to see if I could figure out how to make it, so I made a pot of that, too. DakJuk is pretty much Korean rice porridge.  If you have had Chinese Congee it is that plus chicken noodle soupy flavor.  I made a huge pot and it turned out pretty well. Great for those cold days.  

My tid bit of advice is in EVERYTHING you do add that something little special.  It does matter, even if you are the only one that knows what the added "special" was. 

Today

Today, I'm doing great. Thought I would share.

Raining in My Yukgaejang

Anyone who knows me knows that I have a deep infinity for soup. Jason laughs at me, because wherever we go I have to have soup.

I love everything about it. It is warm, nostalgic and lovely.  

A good bowl of soup always drowns out the frownies.  Soup is especially heroic on those rainy days, even the days it feels rainy inside my body.

This post is actually from November and I finally did an illustration for it. I often tap ideas, thoughts, journal type moments into my iphone notepad.  My iphone contains alot about me. I don't always have a journal book on me, but my iphone is always by my side, so it is convenient.

My iphone is loaded with these random thoughts and moments and I often forget to post them here. The drawing, I tried a Scratchboard method. It is a technique where drawings are created using sharp tools to scrape away at the board. I always liked this. Instead of drawing, you scratch away your image and create negative space.

I remember when I wrote these notes I was having a hard day and suggested to go get some Korean food. I chose Yukejang. Yukejang is a spicy beef soup and yummy to the max. Shredded beef, clear noodles, eggs, green onion all swimming in a pool of homemade broth. This was the post I wrote in my iphone on that day.

November 2010

We rolled into the restaurant and on this particular rainy day I noticed alot of people staring at me. Usually it doesn't bother me, but I seemed to notice it more so today. I wasn't having the best of spirits anyways. Sometimes people stare and sometimes people have better things to do. I like to pretend that they are staring because I am so cool.  Hey, how can I blame them? I would stare, too if I was checking out a really cool person.  

I ordered Yukejang. I like it at this particular restaurant.  The waitress brought me my anticipated soup, and Jason and I were involved in a conversation about how people perceive disabilities...how does it make them feel?...what kind of questions do they have...?

I am always searching to understand how others deal with situations and how they perceive it, because it better helps me to better explain myself.  

The soup was in front of me, and I started crying.  I just couldn't control it. Sometimes it takes over me and I have little control.  I sometimes cry my few minutes, give or take, and then crack a joke and move on, and moving on doesn't happen that swiftly. I tried to shield my face so the people sitting next to me couldn't see me cry.  

At times when I cry, I feel like my insides are pouring out like a bowl of molten soup. I'm not depressed, but sometimes it can bring such sadness.  More than anything I hate the feeling of weakness. I hate FEELING it. My body is a recorder. It lets me feel every moment. This is the thing I hate the most. It has little to do with a wheelchair, yet the knowing that it will not stop and it will only get harder.  I hate that.  

At this point I don't need a cure. I am not resting my laurels on this to make me happy. I would, however, be more than thankful and ecstatic to gain a year back from my body, and stabilize. That is my wish.  To stabilize. Leave me with my fingers, arms and hands. Leave me with my neck capabilities. 

After eating, we wheeled to the car through the pouring rain. And again, so many more stares. Jason threw me into the car while the rain poured so hard that I couldn't even see out of the windows. Or perhaps it was my eyes. They were pouring, too. Most people never see this side of the condition.  They only see the happy. They only see "healthy" and happy pictures and composed poses on Facebook.  It is not a false representation, but there are some really, really dark and difficult moments.

As I stared out the window the city was a blur while the raindrops on the windshield came into crystal clear focus. I played connect the dots with them as they dripped down. I imagined out these raindrop's temporary existence  as well as their travels. We sat in the car for awhile.  I cried and cried.  Afterwards, we drove home.  And then I was ok.

Show 'N Tell

Today, I told myself not to think about it. It is not usually my way to dwell on such things. Usually I press on in any difficult situation, so what is wrong with me lately?  My legs were going numb just from sitting.  I was at at my desk all day drawing and took multiple, on-purpose, breaks to move my legs about and do my little shuffle.  

For some reason I had to use the bathroom a lot today.  As I worked, I was happy and humming.  But, then it calls me. I have to go to the bathroom.  My unpredictable nemesis lately. I struggle to get to the bathroom in fear of not making it in time. I have to worry all the time. I have to feel every move with great difficulty and concentration.  Every step I silently chant to myself, "Don't fall. Don't fall..."   

So, how I can I just forget about it? Previous years it never required AS much thought as it has this year. The progression has been more drastic. 

It finally hit me. I'm not trying to think about it, it just thinks about me all the time.  I am doing my best to (mentally) press on, but in everything I do it calls me. "Pay attention to me".  It consumes so much of my day. Everything I do or even think about doing it's like I have to create a mental plan. A fire escape plan.

"All family members meet in, 'X' marks the spot, please".  

It is a record.  A broken one.  On, and on, and on.  I was thinking of drawing an old record player to illustrate my point, but then thought of the toy/product, 'Show 'N Tell'.  

Show 'N Tell is a Phono Viewer; a combination record player and film strip viewer made by GE in the '60's.  It looks like a little television, but had a record player on top.  The record player tells the story and the slide strip projects images on the TV.  The mechanism for slide advancement is a turntable mechanism, so requires manual rotation.  It was known for its difficulty in aligning, or syncing, the story (record) and the slides (illustration).  

Cool little item for its day, I am sure.  There are several ways I could use Show 'N Tell as an analogy for life and the like. As for HIBM trying to consume my every thought, simply by using its tactics of consuming my every move, I will try to drown it out.  I have too many things to do in life to let it stop me.  Perhaps this will be a power struggle between it and I. Hmmmm...

As I was drawing this illustration, my hands were so shaky.  My lethargic fingers had trouble gripping the pen as I was trying to keep a straight line. I had to intently think of my lines, so much that it felt like I was walking path. I was following the line in my head.  I walked it.  I finally just said, "Screw it", and decided if the line wants to be shaky, then that will be the style.  

With that, Happy New Year! I am excited to give 2011 a run for its money.

Here is a youtube video of the actual product. http://www.youtube.com/watch?v=hgcJV_Shbkg

You Know What Makes Me Mad?

While I was cooking, and cutting my few ingredients, I suddenly shouted, "You know what makes me most mad? One day I won't be able to cook.  Everything I love doing is slowly being taken from me." Selfish, selfish, selfish (HIBM)", I murmured as I continued chopping.  

It is so much tiring than its year prior. Holding a knife, chopping. I don't usually get mad about HIBM, but it keeps rearing its ugly head lately, so I just can't help it. Sometimes I scream loud at it, and then move on my way.  I learn or adapt a new interest as response to a lost ability, and then HIBM swoops down and snatches that one, too.  

I returned to my cooking and secretly told myself, "Enjoy it. Enjoy it. Just enjoy it.

Fear not, I don't usually waive knives in the air while I randomly shout.  It's like I fast forwarded to a senile, crazy 85 year old woman ;).

Merry Christmas

This is my work area. I've actually never had a Christmas tree in my own home, so it was kind of nice. Ambience is always good ;).

The picture to the far right is Pippi waiting for dad to come home. Every day Pippi waits near the door much earlier than dad actually gets home. She just wants to be sure she is prepared. I am currently packing and getting ready for my trip back to Michigan. Let's see how I do in the cold.

Merry Christmas and Happy New Year!!

Gone Fishing

My dad has made many recent comments on how he wished he had a picture of when we used to go ice fishing.  Out of 3 boys, it was I who was his (ice) fishing partner throughout the years. We would go alot, just he and I. I drew this, 'Gone Fishing' for him as part of a Christmas gift, and then framed it.

I loved it out on the ice. Afterwards we would go to this little restaurant for hot chocolate. Blue building with a big white captains wheel hanging on the front. My hot chocolate was served in brown mugs and there were always many fisherman bragging about their catch of the day.

Everyone else had fancy shanties, but we stuck with our buckets that dad had made for us: duct tape, rope and some padding. Besides watching me play soccer for 10 + years, (ice) fishing was probably the only thing we really shared. My dad says that some of the old guys sometimes ask about me. They remember me because I caught the most fish ;)

Every year it gets a little harder and every year I feel like my parents and friends see the fast forward version of my year.

They see my yearly progression in one visit at the end of the year. It must be hard for them to see. My parents try not to cry, but out of the corner of my eye I can see them watching me which then leads to tears.

It's not that they think I am less because I have a disability, but it's hard for any parent to see their child struggle. I have many relationships that I have made in different stages of my life. I have friends that have only known me with HIBM, I have friends who only knew me when I played soccer, but my parents have known me since the beginning.  They seen me running as a little child and into teens and into young adult, and now they see me slowly deteriorating.  

I try to see it from their perspective and how they themselves deal with it.  I think they have experienced some growth in realizing the truth of it, accepting it and then learning on how to communicate their feelings. Many patients tell me that their family experience denial and they don't want to face it. It takes time. It takes time just to realize it is not some colossal joke.

Ten years ago my parents thought I had one leg longer than the other, thus the reason for the limp. No one could expect what was bubbling underneath. No one could know and for 6 years not even I did. I love my dad and I know how much it hurts him. He's opened up about it and cries in front of me. Sometimes we will be on the phone and he cries. It hurts to see me go through this as deeply as I could imagine any parent would feel.  

A common statement I hear from both parents is, "but, you are so young..." 

My dad sometimes apologizes that they were not more pro-active and is full of regret...about many things...but like I tell him it is not about what you did or didn't do in the past, it is about today.  

This journey is not just difficult for me, but all those around me that it touches. Some do nothing, some want to, but don't know how to and some keep a shield over it to lessen the grief. However one handles things as long as there is a journey toward the truth of it then there is progress. Everyone has a different speed and it about understanding them and not just myself. 

How Did I Get Here?

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Not much to say about this one. It feels like Autumn both outside and on the inside.

Autumn is definitely one of my favorite seasons, but seasons always bring challenges along with it. I am slow like a turtle. When lying on my back, I too cannot roll over by myself.

 The laying-on-back position is by far the most challenging and almost impossible. It is challenging and gets harder as the seasons pass. Laying on my back feels strange, because I have no movement. My body feels quiet and still. I feel motionless. I feel like I'm attached to some dead foreign body. I don't know this body.

Most of the time I'm used to it, but on those off and hard days, when I don't care to be 'used to it', it makes me cry, and I think, "How did I get here? How did I get to this place? How did this happen?"

I like to conversate with my ailing limbs, but they never seem to listen. Perhaps I need to buy them hearing aids.

At times I fight it and do my best to do every creative thing in the book to get my myself out of the laying-on-back position and to a more advantageous position, like on my side for this is my ideal position, because at least I can move, roll on my stomach and try and push myself up.

I sway. I rock. I muster any energy I can. My legs don't move and neither does my torso. Unlike a turtle who has that handy rounded shell to help with his efforts, my back is flat and lends no support to my attempted rocking motion, and so I just lay there wondering, "How did I get here?"

A Single Straw

Today I had difficulty opening a straw.  The past year I've been slowly experiencing this, but today more so. I'm not sure if it is the cold weather or just another move toward the inevitable. It serves as another reminder that more is to come. My legs have been the primary body part HIBM likes to eat up, but it is slowly migrating to areas above my torso.

I don't want to deal with what I have seen happen to my legs, happen to my arms, hands and fingers, too. Now, HIBM is just being greedy...

Princess and the Pee Update

So, I've been able to get up from the toilet like I normally do (described in the previous post The Princess and the Pee) with the barstool not too far from my reach for those 'just in case' situations. And I don't mean for an afternoon drink or do I? ;) 

Have to celebrate the little things...

Thought of You

I love this animation, 'Thought of You', by Ryan Woodward.  These are ways design and art can influence, whether it is small or grand scale.  Some where it matters to someone. 

Animation is a very respectable form of art. Most people watch them, but probably never see or understand the amount of work that goes into one.

Animation is the rapid display of sequence of images of 2D or 3D artwork in order to create an illusion of movement.  I have never done animation, but can certainly appreciate the vision and the amount of work that goes into the art.  It's creative, but extremely laborious. You really have to love it to do it. An estimated time frame for an animation is one month's work for every minute.  

Ryan said he worked 20 hours per week for 3 months and that does not include the time for the  dance choreography.  In "Thought of You' it is a dance and the forms are constantly changing which I would think makes it harder to keep up with your shapes when drawing them out. But, 'Thought of You' looks very fluid and beautiful and a story is told with just a few lines.  I like design that is seemingly simple...it's like nature. Nature's design is seemingly simple, yet complex underneath.  Simple design cuts out all the unnecessary, featuring and staying true to its simplicity. It's not easy to design simply. We inherently want to overly complicate.

'Thought of You' is 3 min 3 sec= 180 sec X 24 drawings per second= 4, 440 drawings 

I've watched this video alot! It struck me right away, but probably not the way the artist originally intended. It is a love story/loss between a couple. But, for me I related it to my body. As my body progresses I am obsessed with movement and I closely observe others and they way they move.

Everyone has a different sound and tempo and I find myself mentally assigning one to everyone I meet. This is how I remember them. I've documented their moves and filed them in my mind. I take joy in watching them move with a trailing sadness at times.  As I watched this animation I found myself studying every still image to see the artist's transitions.  

Since I am not an animator, I am curious of the art form. All design/art has a similar lineage and I like to mentally spot the connecting factors. One is communication. Communication ties everything together.  As I have been increasingly interested in illustration, for the purposes of sharing a perspective and story, animation has been peaking my interesting as well. Illustration is a tool for communication. I feel I am able to share something about me through it and animation, I feel, would be great for me to communicate movement...the way I perceive movement...the way I see myself move...the way I see how others move...Movement is beautiful.

In your body, in your mind, socially, historically, movement is continuous even in the moments we feel like we are motionless. However, good animation is highly skilled and you have to respect it. I'd love to be able to do characters of myself and show how I move...wobbly and all.

When I watched this video my  "Thought of You" is my body and the increasing loss of it. I interpreted it differently than the animation's love affair between the couple.  My version is the love between myself and my personal movement.

For the past week I have been having a hard time, probably a slight depression. I hesitated to share it here, because...well, I guess I don't want people who know me to read it and be worried. Or a potential employer to stumble on my blog and think I'm too depressing to hire but, I should be honest because of most of us have these moments of depression, doubts, instability, moments of "immobility" -- with or without a physical disability.  

It would be a disservice to pretend I don't experience depression and sadness. How can anyone benefit from someone saying they are happy all the time when they are not. This doesn't open the gates for others to see 'there are others like me'. I know I have all the right in the world to feel sad...this is not an easy journey for me and for anyone else experiencing the like.  So, yes to me this video is about the relationship with my body and even the song's lyrics contributed.

Over the past couple weeks many times I just wanna stay in bed and never come out. Put the covers over my head and not face it. 

Woke up...With an aching in my head...I lay motionless in bed...I thought of you and where you'd gone...Everything that I said I'd do...And take the time for you...The whole world is moving and I'm standing still.

I'm doing fine, though...that's the point. There are good days and there are bad and you just have to get through the bad...that's it.  

When I was driving today I had two thoughts. 1. Creativity and humor saves me 2. I am always thinking of ways I can explain HIBM and how it feels. Not for pity or for the receiver to pat their own lives on the back with exclamations of how lucky they are not to experience these struggles.

It's not for that purpose. I want to share what it is like, so it can be understood. Even though it's difficult and sucky, it is still a (valuable) perspective, and for growth's sake it helps us to absorb as many perspectives as we can.  

When I was able bodied, it wasn't possible for me to really understand what it is like to have a disability, and it was never shared with me. But, now that I experience it and face the challenges the perspective is huge and unruly.

So, how I would explain slowly progressing condition that debilitates you?  I know Point A (able to walk, run, bike ride...etc) and I know the potential Point B. (can't walk, can't run, can't bike ride, can't hold a fork, complete debilitation).

I was thinking about sudden change...a car accident or any accident that turns you into a paraplegic or quadriplegic in just a few seconds. A few seconds for the accident and a few seconds for someone to tell you your diagnosis and the self realization that your life is forever changed.

These few seconds are dragged out over years for me. It happens in extreme slow motion. It's picking at me. A picking wound. It's constant. This comparison is not for the purpose of saying one is worse than the other, because both suck, yet to explain how it feels.  

It is so slow and drags on for years. Even though I have had HIBM for 10 years, it still feels like an enigma to me. I sometimes sit and think "Wow, how did I get here? How did this happen?"

It's still surprising and even though I know beginning to experience Point B and am already at a very progressed state, I still can't imagine that in 5-10 years I may not have function of my arms, hands and fingers. The realization is always in motion.  It feels slow and fast at the same time.

I don't mean to seem like I only live in my past, but let's face it, a loss that is ongoing conjures up memories. Sometimes fleeting and sometimes they stick around for 2 weeks straight.  With that, I am feeling better today. Busy working, scheming and dreaming.

I hope you have giant dreams, too. They are worth the time.

The Princess and the Pee

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I wrote this post a couple weeks ago, but just did an illustration for it today. It is cute and light-hearted, but honestly, I feel anything but.  It's been rough the last couple weeks.  Feeling highly unmotivated and..well...sad in general. One day I should break out all the illustrations I want to do that have a more serious tone, but this 'princess and the pea' was next on the list. 

November 23, 2010.

The last week and a half I've had increased difficulty  getting up from my toilet at home.  At the beginning of this year I had to get one of those raised (elevated) toilet seats, so I can get up by myself when I am home alone.

Nowadays, if I am anywhere but home, I need help to get up from any seated position, especially the toilet. Toilets are too low for me. In my 3.5 years in California I have lived in 3 apartments and in each one of them I always have to figure out new and inventive ways to get up by myself, and my current home is no exception.

This combined with increased weakness forced me to get a 'booster' seat this year. Getting the raised toilet seat was like pure freedom.  At the beginning of this year it was already getting hard for me to get up and down and since I am working from home it was important for me to be able to do this on my own.

But, the last couple weeks it has been harder to get up even with my booster seat.  Sometimes I need to keep trying and this trying can last for 10-20 min.  Today was the worst, though. I sat there and tried to get up for nearly 40 min. My bathroom is fairly small and with any new bathroom, or new environment, I need to have creative planning at hand.  

How I usually get up is:  The toilet is right next to the door. I grab onto the door knob with my left hand and position my left foot in front of the door. This way I have leverage and can balance the opposing strengths. I pull myself up with my left hand, push against the door with my left foot and simultaneously I push up with my right hand that is resting on the 'booster' seat. Due to the length of my arm I can only push so high, so I rely on positioning my hips, so that my leg can rest in the hip socket and I can push the rest with my leg.

But, today this wasn't even working.  I keep trying, but just plopped back down.  Eventually I had to stop and rest so that my legs wouldn't tire or damage to the point where it's impossible for me to use them.  After each failed attempt I grunted, groaned, pleaded and got increasingly angry--hoping that the anger would drag up any hidden energy left in my leg.  

"This is ridiculous", I kept thinking.  

The house sounds so still. I can hear the furnace wheezing, the birds outside, Pippi's pacing paws on the wood floor, my home's every breath. It's so quiet and I feel alone.  

As I keep trying I am dangling in the air hoping, awaiting to see if I have the right balance or lift, but end up falling on the toilet once again.

"If only my booster seat was taller" I thought.  

Dropping down is easy, it's the getting up and lifting that is hard. During this ordeal, for some reason I thought of the fairytale The Princess and the Pea.

It's about a young woman whose royal identity is established by a test of her physical sensitivity to a stack of mattresses that cover a single pea. This single pea at the bottom of the bed keeps the young woman awake the entire night. Since, only a true princess would have the sensitivity to feel a pea through a stack of 40 mattresses she is crowned princess.

As I am trying to creatively figure a way to get up off this overly warmed toilet seat, I imagine stacking up these toilet seats, so that I have enough height to stand without a problem.  I don't expect a prince at the end of this feat, I just want to be able to stand up. 

I still remember, about 8years ago, when a doctor asked me if I had a hard time getting up and down. Back then I had NO problems getting up from a seated position and often found his questions puzzling, but now it has become virtually impossible and the symptoms of HIBM are stacking up one by one--revealing its true form.  Any seat I sit in has to be a perfect height and my environment fixed a special way for me to be able to get up by myself.

We went searching for an alternative toilet solution. Unfortunately, there is nothing out there. I mean, there are things, but they don't tailor to every type of condition and their specific needs.

My current booster seat is 5" tall.  I think a 7" would work. We tried toilet side-rails but my arms are too weak for me to push myself up with that configuration.

We tried one of those adjustable toilet seats that uses nuts/bolts, but that was too unstable.

I'm not disabled enough to need to hire assistance and if I did it would only cause me to rely on others more and my progression would come more rapidly. So, the current solution, which is working, is a barstool.  

No, I don't shake up martinis and cosmos on my toilet, though not a bad idea for the future. I use the stool as a platform and leverage, in the same way I get up and down from my desk. I place it in front of me, lean on it and then push myself up with both legs and arms.

Going to the bathroom is something we don't think about. It's easy. We do our thing and don't give it another thought.  But, for me, and others like me, going to the bathroom is an increasing ordeal.  

With that, I crown myself The Princess and the Pee.  

I can make humor out of anything, but at the time it is happening, it is anything but funny.  I get intensely frustrated and feel way too alone, and these moments only remind me of the long road yet to come.  These moments will only increase in number as time progresses.  Sometimes I'm not sure if I have the "strength" to endure all that is ahead of me...but, I'll keep trying.

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