Peek-A-Boo, I See...Me?

Hmmm, it's 3am. I'm seeing a pattern here. I guess I will use this time to finish this post.

I’m reminded of a child playing a game of peek-a-boo; as they cover their faces with their hands they can't see you so, you must not be able to see them, right?  

What is to be "seen"?  I feel the more you try to hide something the more obvious it becomes, so you might as well be upfront about it. In my daily life, and through my interactions, I try and be as transparent as possible about my condition, after all I indeed have a disability and there is little I can do to hide it.  

Whether I want to or not, on a daily basis I am forced to instantly share this most intimate, and sometimes painful, part of my life with those I cross paths with.  There is no hiding it, no matter how I try to trick my mind that others can't see it.  

My "weakness" is on the outside for all to see and in this moment I have two decisions.

Do I try and hide it or do I go along with it and share it?  

What is disability anyways? We have attributed it to the lacking of physical, unable to perform, but the truth is we all have things that "disable" us in life, some are just more apparent than others. Some cripple themselves with fear, insecurity, lack of motivation, lack of scope or understanding, selfishness, pride, laziness, arrogance, regret...and the list goes on.

We all struggle and we limit ourselves…mine just happens to be more visible and my "limitation" was not a choice given to me. 

Growing up I wouldn’t say I was the type to openly share all my feelings. In fact, I was more introverted, proudly independent and lived within myself. 

Who wants to talk about their feelings, emotions and the things they struggle with?  It requires vulnerability and open to judgment, and let’s face it most of us don’t do well with judgment.

From the beginning of my diagnosis, and finding ARM, I chose to "go along with it" and share it.  I perceived that as being the most productive route.  At my previous job I even organized presentations in an effort to spread awareness.

In textbook form I openly shared my condition, who ARM is and tried to make everyone comfortable with “it”.  I have realized that most people don’t have the opportunity of being around a “disabled” person and in many cases I was their first. 

Even I didn't really encounter disability before becoming disabled and thus never really understood it, or rather never took the time to recognize it and so, I consider myself an opportunity for others to be educated. 

It was my hope that the more open I was, the more comfortable people would be to ask questions and thus less barriers.  If I was open, they would be open and then the decision in how to react or perceive it would be up to them.

Do they open up or remain ignorant or closed? It is up to them. I did what I could.

For the most part I think people want to know they just don't know how to ask.

I've actually been keeping a written journal for a while and have had this blog account for the past year or so, but only recently made it public. One, because I've been too busy to get it up and running and two, I think some part of me was a little scared.  

Admittedly, I’ve had trouble since I started this blog and it even has affected my sleep.

Hmmmm, that was unexpected.  

Sometimes it even takes me awhile to get a post down. I start it and then walk away, because I either want to express it in a way that can easily be understood or it becomes too emotional and so I escape it.    

My decision has been "to go with it" and with the people I cross paths. Make what is obvious, obvious. But there is a level that not everyone gets to experience with me. It is all the details, the feelings, frustrations, the physical struggle, the revelations, the sadness as well as the joy that is all wrapped up in it. 

Making my thoughts public started triggering past memories of being active and everything I've experienced over the past 10 years. The progression of my condition, and even the past 31 years of my life has inundated me. More recently I've been lamenting over loss and sometimes even reading my own words brings me to tears.

 I'm aware that some of my readers are people I know, but in some ways it would be easier to share if they were all strangers. 

Being open isn’t always easy and the fear of judgment or recommendations on how to do it better lives there.

My words are here for people to judge, feel sorry for and worse, pity.  Gosh, I hate pity. It means you don't understand. I'm not looking for pity, or a pat on the back, all I really want to do is build understanding.

Truth is, sometimes I get tired of sharing all the time and there are times I feel alone in this quest and I just want to crawl under a rock and never talk about HIBM again.  

I don't want the accountability and I want to have a life outside of it so, I can be free of it on my own terms.  I want to be able to take off on vacation, go to the beach, not have to face the struggles of a small organization and not come home from work to more work.

I already live with HIBM on a daily basis so, do I really need to pile more responsibility on something that is already difficult to handle? 

But, it always goes back to 2 choices.  I can look inward or outward and both in a sense are helping myself, but one is for the greater and not just about me, and so that is why I continue to share, because I truly do want people to “see”.  

Everything is about perception.  Do I perceive this as the most horrible thing that has happened to me or the greatest opportunity? We miss our opportunities all the time and thus don’t meet ourselves or take the challenge. And while it is difficult to be so transparent, I think it would be much more difficult to sit on the sidelines and let this experience go to waste...and so...I just want you to see.

A Little (About) Me

Lately I've been busy working on my professional portfolio so I haven't been posting as much, but I do have a surplus of posts and I am going to try and do one post per day. Let's see if I can ;).

In the meantime, I thought I would share a little illustration I did.

It is my first caricature and it... is... of... me! I'm not exactly "trained" in illustration, but I'll keep practicing and hopefully I'll improve.  

"She" (little Kam) may pop up here from time to time. I think she could be a good tool to explain the little scenarios I get myself into; whether it is related to my condition, thoughts or just life.

I guess I'll give a little background on myself...shall I start from the beginning?  

Ahem, In a town far far away under a starry starry sky...

I was born in a little hospital in Daegu, South Korea. Shortly after my birth my biological mother abandoned me leaving no trace of her identity. The nurse named me Young-eun, which translates to something like, shining silver or silver bell. So there I was born into struggle from the start, an orphan, along with a list of medical problems. I was born with a cleft palate, at 5 months old had chicken pox and measles in the same week and even had a deadly liver virus.

How could someone so small make it through? A cleft palate is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined. I was extremely fortunate as this was not accompanied by cleft lip or other parts of the face, which it usually does.

The deadly virus ended up going into dormit a couple years later and the chicken pox and measles? Well, I still have the scars :).

Growing up I was pretty sensitive to these scars because kids would make fun of the ones on my face. In addition, due to my cleft palate, I had a slight speech issue, so obviously that was an easy target to make fun of, too.

--- Coming to America ---

After getting better I was later transferred to a crowded orphanage in Daegu and then into foster care the last 6 months of my time in Korea. At 4 years of age I was adopted by an American family and traveled to the United States to finally live with them.

My mother, Australian, and father, American, already had 3 sons and now me.

I would say my childhood was pretty "normal".  With 3 brothers I grew up a tom boy and played alot of sports. I was my dad's fishing partner and this included ice fishing.

Yes, ice fishing! I guess the other day some of the older guys we would see around the ice hole asked my dad about me.  

I played Soccer for about 11 years or so, including high school soccer.  During high school my condition starting expressing symptoms, but at the time I was completely unaware. I've had HIBM since birth, it's in my genes but it allowed me to have a good "run" for 18 years before demanding its voice to be heard.

I practiced Isshinryu Karate for some years until my condition got the best of me. My friend nicknamed me "Dragon Lady".  

Not many know, but before I "bowed" out I was to go up for my next promotion; a black belt. When I felt the test was coming I bowed out because that's not how I wanted to get promoted; feeling all broken and frustrated from my non-functioning body.

I wasn't as concerned about the title and I guess in my mind I wanted to do my black belt test like everyone else with no special treatment.  

My condition was starting to really take notice and I had difficulty achieving balance and doing simple kicks. Looking back I'm not sure not sticking around to get my black belt was the right decision. There was actually a well-known black belt in a wheelchair in the Southfield dojo.

But hey, I was new to this and my condition was taking me on a tailspin. At the time I didn't even know what was wrong with my body and I don't think anyone, including myself, imagined it would be like this. 

--- What I do ---

I'm now an Industrial Designer and I truly LOVE what I do. How fortunate am I to be able to do what I love? I guess as a child I wanted to be all the typical things like paleontologist, doctor, lawyer. I did draw in high school, but never expected that it could be my profession.

Throughout school I was your typical good student and from early on I knew if I wanted to do anything in my life I would have to save to get myself there.

My family wasn't poor but they had four kids and wouldn't be able to support my collegiate endeavors. Since I was a kid I was a saver. If my grandma gave me easter money I would put it away and save it.

Was I a squirrel?

Many times I worked 2 jobs and at one point 3 to get myself through college, car bills, medical bills, apartment, etc.  It's nice to be given everything but I am actually quite thankful to have had the opportunity to work for everything I have. Though I don't feel in anyway my path means every one else who struggles has no excuse.

--- How did I find out I wanted to do be a designer? ---

After high school I attended community college, so I could save more until I decided what I wanted to do with my life. 

There was never just a moment of "what do I want to do with my life?" where I figured it out immediately.  

I don't think it works like that and the answer doesn't remain the same throughout your life.  

We constantly evolve and so do our passions. It is a continuous building upon prior experience and self, but I digress. At that time I wanted to be an architect. I was accepted into Lawrence Tech University, a Michigan based college specializing in architecture. I was even given a small scholarship.  

In addition, I was also awarded a 4 year full ride to Wayne State University. Wayne State is most known for it's medical program and at one point I even considered entering the medical field.  

During the search for my diagnosis I had met a chain of terrible doctors and thought, "They have all this book knowledge, but they have no life knowledge, no compassion, no passion..." and I thought perhaps that was something I could offer given my current experience.  

I ended up turning down that Wayne State's scholarship. Why? If you asked me then I would say stupidity, but if you ask me now I would say it wasn't a bad decision except I did trade that full ride in for a high-priced Design college that could possibly leave me in debt forever ;).  

I had heard about this private art and design college in Detroit called, College for Creative Studies.

I heard it was one of the best so on the fly I stuffed a bunch of art work into a portfolio and drove to the college admissions. I actually didn't expect I would be accepted since their reputation was known for letting only the best of the best in. But they accepted me on the spot.

Wow, how lucky was I!??  

Right then and there they asked me what I wanted to major in and my face drew a blank...hmmm, I hadn't thought that far... photography? fine arts?

The admissions suggested Industrial Design. "Hmmmm, what is that?, I replied.  

Blindly I went into the program and fortunately ended up loving it.  I know, not exactly a planned out decision but I would say much of life is like that and you have to go with it.

Not everything should be planned but yea, risky when it costs that much and you don't have the luxury of someone else paying for your school.

I ended up majoring in Automotive Design, though I did  product and graphic design projects on the side.

What is Industrial Design? It's all the "stuff" around us. Everything and anything. From shoes, cell phones, computers, coffee makers, tooth brush, furniture, cooking ware...

Like I said, I love what I do. I love design and all its potential. I love how it touches many facets and it is not just about the drawing rather the combination of processes: problem solving, business, creativity, communication, psychology, sociology, people and everything in between.  

--- Then came marriage and a ...dog? ---

I'm married and have a little dog Pippi.  I ended up marrying my friend Jason in September of 2009. We went to same college but didn't date until 6 years later.  

When I was a freshman at CCS, he was a sophomore and by chance we met near the parking elevators. Apparently he had seen me around campus and I've never been sure if this "chance" meeting was staged ;).  

At the elevators he asked me to go to Detroit Greek Town for dinner and I agreed.  My mom always told me to be careful with strangers and I obviously did not listen but he looked harmless enough. I assessed the situation and knew I could take him down if needed ;).  

We went to Greek Town that night and afterwards hung out from time to time throughout school. But I never was really interested in dating. It just wasn't the right time.

Years later, he moved to California for a job and after I graduated I ended up moving to California as well.  I was having a hard time finding a job and Michigan winters were getting hard anyways, so I had been considering on moving to California. There were more design opportunities in west coast and I was itching to look for work.  

One day out of the blue Jason had called me.  We had not really kept in touch, but after that call we started talking on a regular basis. I told him my plans of moving to California and he strongly encouraged it...and well...that encouragement led to me moving to Cali and then of course dating.  

Jason has been my very patient support through all of this and I'm so very grateful for him. I couldn't do much of what I do without him or at the very least it would be that much more difficult if I was doing it alone.

My move to Cali led to a job, a husband. California is also where I first found out about ARM and met my first HIBM patient; the very thing my Michigan doctors told me would never happen.

So, that is it, a little quick intro to my life. 

I'm a designer, but not "designerly".  I love to cook good food because it gathers people, but not a foodie.  I'm a dreamer and seek for potential. I look forward to the future because in 10 years I hope I'm doing something totally unexpected. The older I get the more adventure I desire and internally I feel like I am constantly learning and growing. Sometimes it feels like it is too fast for me to keep up with.

I have a "disability" that challenges me every second of every day but I'm not without ability.

And like the quick little background I just gave on my life, my condition is just another chapter in my life.

Despite it and even because of it. I am still me. Kam.

I'll Be Back

Trying to stay true to my attempt at one post per day, I'll post what I am doing right now.

It won't be an earth shattering update but don't have the energy to do a big one.

I just finished some work for the ARM gala and now I am sitting in bed with my laptop, a position you will usually find me in. I am replying to a few patients that have emailed me. I would say I am in daily contact with at least one patient per day whether it's South Africa, Shanghai, Bologna, Japan, Canada, New Jersey. We are all over. I'm not always great at replying right away but I do my best.

I appreciate that so many patients email me and I've just begun skyping with a few which is cool. That was one of the reasons why I started a blog, so even though I may not reply to patients right away at least they can catch me here and get updates.  

Since we moved to Northern California Jason, my husband, gets home pretty late and is usually tired.  I'm the type that is usually working on something and these days most of the time it is ARM related.

Sometimes I feel bad that I am always doing ARM stuff, so there are times when I need to pull back and say, "Lets do something Jason wants to do". Fortunately, in this situation he understands "priorities" and the importance of helping out. 

What did Jason want to do?  Jason wanted to eat terrible food and watch a "nerd" flick and so I am fulfilling that request.

I'm sitting in bed Indian style watching Terminator 4: Salvation with a grease filled belly. Pippi is sitting on the floor with her sad doggy eyes asking for food without asking.  

We have "wood" floors in our place. Pippi is funny because as she sits with that hopeful look in her eyes her legs slide beneath her until she is almost in a laying down position, haha. She cracks me up on a daily basis.

My legs, quads to be exact, are for some reason pretty sore today. And my neck is pretty weak but my glutes (butt muscles) are fine in case you were wondering ;).  

Ok, gotta go. Jason is shouting that I am missing all the robots.

UPDATE: 4AM. So the movie was bad.  I already heard it was.  How could you top the first and second one?

I've Fallen, and I Can't Get Up!

You know that famous commercial featuring elderly crying, "I've fallen, and I can't get up"?

I never thought I would be reenacting this commercial several times over at 30 years old.

I'm currently seeing things from an ant's point of view. I JUST FELL.

I used to be able to get up by myself, but for the past couple years it is nearly impossible for me to do this. I now need assistance.

I am now blogging from my iphone on the floor. Thanks, technology.

No one is around to help. I fell in the kitchen and I'm strategizing if I can get up without straining myself. I think I can drag myself to the kitchen chair and try and lean on the chair and pull myself up.

It's 3:30pm I have alot of stuff to do and I don't feel like waiting until 8pm when Jason, my husband, gets home. I'm leaving for LA tomorrow and I have much to do.

So, I scooched my butt over (good thing I have lots of padding) and I'm now near the kitchen chair. My dog, Pippi, is cheering me on. She looks worried and confused.  

Ok...so deep breaths and let's see if I can get myself up..

UPDATE: So, an hour later I think it is time to admit defeat.

I'm not in the editing mood, so this will be all babble.

If I go any longer I will strain my legs and not be able to walk afterwards. I got to the kitchen chair and thought I could throw my belly on the chair and push myself up. I'm not sure why I thought I could do this, because I haven't been able to for awhile. I tried to get on my knees for leverage and lay on the chair, but couldn't...hmmm, what else can I do?

I decided to scooch to the bathroom as there is a lower chair in there. It is one of those bathtub adjustable seats. I drag myself from the kitchen to the bathroom and I notice, man these floors are dirty.

I guess my butt is cleaning the floor?

I get into the bathroom and try to get up on the plastic shower seat that is sitting near the bathtub. This time I bend myself over the bathtub side and hold onto the seat and try to pull myself onto my knees and lay so my belly is on the side of the tub. This is hard because my arms are getting weaker, too. I rest my head on the corner so I have extra leverage...but it is not working.

Ughhh, it took me 20 minutes just to get on my knees.

That's ok...I'll keep trying. I can do this.

By this time, I start to cry and Pippi has gave up on me and went and hid under the bed.

I think she was worried and didn't know what to do for me. I say to myself, "I just want to get up...that's it...and go to the bathroom!"

I have to pee real bad. I sit back on my butt and I think if I take off one leg brace it will help, because I'm having trouble bending my legs.

It doesn't work, because my leg/foot is now to weak to push my body...plus the floor is slippery tile. I keep trying...I try to push my body onto the shower chair so my belly is on it, but I can't do anything from there and laying on my stomach just makes me want to pee more ;).

I lay belly down on the shower chair, hanging over the tub, but I'm not able to achieve much more than this.

I'm feeling a little upset and just cry...I hate these moments...I could do this a couple years ago, so why can't I now...? I can't even crawl or kneel. My legs just don't work like that anymore.

I feel alone and even my fighting spirit is not enough to get me up off the floor. I lay on my stomach for a few more minutes staring at the tile grout. I sat there for a little while.

I scooch myself to the bedroom and now I am just waiting.

I still have to pee...damn that coffee. I know I'm inserting some humor here and there...but it really is not that funny and it's hard.

I guess I wanted to try and describe what it is like to do the little things.

3 AM

What do you do when it is 3AM and there is no one to talk to?...Watch Food Network.

Bedtime, All In a Day's Work

I just finished making dinner and truthfully this was about the only thing I did today. Pippi laid faithfully by my feet to catch any droppings. I think she thinks she's helping mom so she doesn't have to bend over.

We just got back from LA last night and I am emotionally and physically tired. I slept nearly all day today and had a hard time getting around in my house. I was in LA for almost a week and 4 of the days were without Jason. Every time something changes in my daily routine, or life, my body has to go through some major adapting and compensate to any little change.

Personally, I love change but my body votes heavily against it. The "change" can be anything from sleeping in a different bed, showering, how far I have to park my car, how the street inclines and differs from what I am used to, counter heights, chair heights and the list grows every day.

My visit was busy and I had lots of meetings, many of which were with LA Times.

Obviously this is great for awareness, but emotionally and physically it got hard towards the end of my visit. I cried alot on this trip. In fact I cry more recently and for some reason this year has been tough. I share this because I know there are some patients that read my blog and I think it is important to be open and honest. I don't want them to think that I'm perfect. that I never get upset about it.

In fact, if I wasn't expressing sorrow, I'd worry more about that. No matter how positive I may seem it is still hard. The positive face is not a facade, what you see is what you get with me, but I still experience really difficult times.

There is a statement that I hear often and it is very telling. "Kam, wow, you look great. You look healthy..."

I realize visually I may look fine. I look kept, my hair isn't crazy, I'm smiling and I don't have food all over my face (or do I?).

But my body is anything but. On the inside I am deeply conscious of all my physical struggles and it is a constant challenge. When my body is physically challenged to its brink it can be hard on the spirit. I think it is because I am at a point where going into a wheelchair would relieve me physically and in essence potentially gain more independence, but I am trying to keep myself walking. I need to keep myself walking.  

A chair presents problems, too. In some ways I would gain the ability to move around faster but lose independence as well. 

Another one of my friends I met with was shocked to hear that HIBM was debilitating.

Now, I've told this person more than a few times that my condition is debilitating, progressive, could reach paralysis-like symptoms, quadriplegic state (though HIBM is not nervous system oriented). I'm not sure how many ways I can explain what "debilitating" means and sometimes it is truly frustrating. I feel like no matter how much I talk about it, no one really understands what I am saying.  

It has only been recent that I have started describing the potential prognosis as quadriplegic state and I know this may be hard to hear, but I just don't know any other way to explain the seriousness or the sense of urgency attached to it.  I imagine it is an abstract concept to many. 

How can someone so young, someone I went to high school with, someone I went to college with, someone I played soccer with, someone who is walking right now in front of me get to a debilitated, bedridden state?  

***I must note that not every patient ends up this way and every patient progresses differently.

I have to stop typing now. I'm in bed hunkered over my laptop and having a hard time with my neck. This is a recent weakness. If anyone was here watching me type they probably wouldn't notice that it was hard for me, but every muscle in my neck is working overtime to do something as simple as holding my head in this position.

It's bedtime. BED, we shall continue our day-long love affair.

Out of Love...and Black Licorice (Roadtrip to LA)

I am up early and on my way to Los Angeles for some ARM business and meetings; including another meeting with an LA Times writer who has been pursuing my story for a couple months now. In addition, it's ARM's 10th Anniversary and we are celebrating and fundraising in Gala fashion.  Let's see if I can encourage others to attend and support the event.  This is always the difficult challenge - getting people to come. We haven't sold many tickets which makes me nervous because the event is right around the corner (June 27, in Los Angeles). 

Jason packed the car before he left for work. This is Pippi's first road trip and I'm wondering how I am going to manage her and all my appointments, but there is no other option but to take her. Good thing I have good friends in LA :). Unable to sleep, I have been up since 3am so I'm already tired. I just stopped to get a coffee drink (shhh, don't tell Jason. He hates that I drink these overly sugared coffee drinks). I'm in the parking lot trying to unwrap a straw so the deliciousness can begin, but I'm having trouble. Ahhh, it's going to be one of those days. I find myself focusing on forcing my languid fingers to unwrap a silly straw.

I just arrived at San Francisco airport and waiting for my friend. I can't do road trips by myself anymore which makes me sad because it has ALWAYS been one of my favorite things to do. I love driving long stretches alone because it is where dream up all my best ideas. A drive from San Fran to LA is about 6 hours but I can't do that drive, so I'm at SF airport picking up my friend who flew up so she could drive me down to LA.  Since I moved to northern California this will be our second time doing this. Her name is Sandra and she is the wife of Dr. Babak Darvish; an HIBM patient, ARM Co-founder and President. She's so much MORE than just "the wife" but I'll formerly introduce her in another post. She paid for the plane ticket out of her pocket just so I could come and out of pocket I pay for the road trip and Jason's ticket so he can fly down to LA and drive back up to San Fran with me. Currently this is how we handle me traveling to LA. Sandra's only condition? That I buy her some black licorice for the road trip. ;)

ARM is a nonprofit that works hard to achieve every dollar donated, so it is these little volunteered acts that helps them in little ways. ARM and HIBM Research Group (HRG) are made up of only a few people who have accomplished much for the future of HIBM medical research - despite many struggles and financial barriers. It seems like we constantly do so much for so little, in hopes that around the corner someone with means will take interest, invest and help take HIBM research farther.

It's really nice that Sandra picks me u, but then does it on her own dime. I love her and the Darvish family. These selfless acts are out of love. They work patients like me; out of love and empathy knowing what it is like to be us because they ARE us. Knowing how emotionally painful it is for me and then knowing there are others experiencing the same moments makes the experience even worse. Generally I am a go-getter. If I see something that needs to be done, I'll do it but witnessing this sort of love is what makes me work harder.  It's not just for myself but out of love, gratitude and inspiration to those who work for me. Seeing those who have sacrificed their life and well-being for the greater good of this condition is not an everyday occurrence.

As time has progressed, I realize that not everyone responds to pain with love and giving. Some become inverted, angry and selfish, which is understandable in many ways, but I can't see it this way. How can I just stand by and do nothing? It would be like me ignoring this firsthand life experience, this opportunity to learn despite the struggle. I think it's love and will that keeps us going. That has to be it. That can only be it. Because it would be too difficult without it. I've found that giving comes from inspiration and vision of potential. If you're really inspired, grateful and humbled - giving is genuine; a natural act and less calculated.  If it's a conscious etffort to give then it is forced accompanied by a lack of understanding of what is truly important. Love, grace, selflessness, understanding, tolerance, compassion: less about "me" and more about "you".

Emotionally and physically dealing with our condition and then trying every day to work for a cause that is constantly hit with barriers, down moments, not enough money, not enough "hands". It has to be love that keeps pushing our tired bodies forward. I wish you inspiration today, and if you do feel inspired then hand it off to someone else.  Even if it wasn't me affected with this condition, if it was my family, friend...I would hope I would do the same.

Crayon Pirate

"There was a single blue line of crayon drawn across every wall in the house. What does it mean?, I said. A pirate needs the sight of the sea, he said and then he pulled his eyepatch down and turned and sailed away."
- Crayon Pirate-

Don't forget to use your imagination today, it will be your best source of direction. It usually is but we tend to get in the way.

Softer Days

I had a co-worker/friend that I would sometimes talk about my condition with, and most of the time I would spin it in a positive light even if I had just fell in front of her. One day I fell and she said to me, "Kam, you don't always have to be an after school special. It's ok to be sad".

I'm not my usual after school special today, for awhile, for that matter.

It's getting harder.

There are days when I have so much perspective and I can see way beyond myself. I see potential out of nothing, blissful in the little things, see the sheer goodness in others despite their glaring faults, sense love deep down, think life is too short and couldn't possibly house all my dreams and ambitions and take everything in stride, while devaluing what I am experiencing because I think anyone can do it.

And then there are other days when I’m just trying to keep it together. This is one of them.

I don’t feel like I belong anywhere. 

"My grandma used to plant tomato seedlings in tin cans from tomato sauce & puree & crushed tomatoes she got from the Italian restaurant by her house, but she always soaked the labels off first. I don't want them to be anxious about the future, she said. It's not healthy." -Brian Andreas-

 I'm sure the world will appear a little softer soon.

4AM

I feel shitty right now. My body feels like a corpse that I'm dragging around and I just happen to be along for the ride. It's 4am. My body aches, each limb feeling disconnected and I can't sleep. The air is warm and stale and there's the drone of snoring in the background. Uggggh, the snoring, at least I don't snore. No floppy tissue for this girl. 

What the Heck Is HIBM, Anyways?

The textbook version of Hereditary Inclusion Body Myopathy (HIBM) looks like this:

HIBM are a heterogenous group of rare/orphan genetic disorders which have different symptoms and could be transmitted in an autosomal dominant or recessive fashion.

Generally, they are neuromuscular disorders, unlike MD which is skeletal muscle weakness, characterized by muscle weakness developing in young adults, causing progressive muscle wasting and weakness that can lead to very severe disability within 10 - 20 years. HIBM is also known as Distal Myopathy with Rimmed Vacuoles (DMRV), Quadriceps Sparing Myopathy (QSM), or GNE related muscle disease.

Now I could go into it further, talking about HIBM linked to chromosome 9, the defective gene regulating bifunctional enzyme GNE, that is the rate-limiting step in the biosynthesis of sialic acid and that Sialic acid modification of glycolipids and glycoproteins at the cell surface is crucial for their function in many biological processes BUT I'm guessing no one wants to read that or understands the "meaning" except for those in biomedical research.

The experience is so much different than the textbook image. In 2003, over the phone of all places, Mayo Clinic gave me my HIBM diagnosis. But my symptoms probably began in 1997/1998. Due to having 5 previous incorrect diagnosis', and a series of bad medical experiences which I will probably share later, I wasn't even sure if HIBM was the correct diagnosis. Clinically, though, I treated it as if it was, so at the very least I could seek next steps...if there were any.  I'm the  researcher type so naturally that's where I started. I remember sitting in a dimly lit college computer lab perusing online medical journals for information only to find the same bits of word clusters. I read the textbook definition, the prognosis, the symptoms and the black insubstantial words staring back at me; RARE, WHEELCHAIR, WEAKNESS, DEBILITATING, GENETIC, NO CURE, LIFELONG. I thought, "Well this can't be all of it. It doesn't make sense, there has to be more information...something". In actuality, it wasn't the information -- I just hadn't attached meaning to it yet. I was alone in my space - in that college lab feeling neither sad nor angry, but detached. I had been through a number of diagnosis' before, the poking and the prodding, the muscle biopsies, so to me this was just another diagnosis. I had a life to live and these words meant nothing to me, at least not as much as they do now.

In 2004 I remember visiting my physiatrist with this new diagnosis in hand thinking perhaps he would create some understanding out of all my research efforts. He evaluated me and asked me weird things like, "Can you be in a sitting position and rise without needing to hold onto anything?"

I thought, "What a silly question. Of course I can" and would demonstrate it for him in an almost cocky-like manner.  "Hmmm, I can do this all day, Doc. Keep it coming". 

Today, getting up and down from a seated position is difficult and slowly turning into non-existent. That moment in the physiatrist's office is suddenly clearer and more real than it was when it actually happened. As the years progress, so does my body and when I recognize those measurable moments of progression such as; climbing stairs becoming difficult to non-existent, to not being able to ascend curbs, to not always being able to roll over in bed by myself or having trouble with unscrewing a toothpaste cap, I grab from those insubstantial black words I read in that dimly lit library and I start to attach meaning to them - slowly, like adding photographs to a scrapbook.

de·bil·i·tat·ing (dĭ-bĭlˈĭ-tāˌtĭng) adj. Latin debilitatus, past participle of debilitare to weaken, from debilis weak

"Ahhh, yes. I know what that word means. Gosh darn it, I went to college and Webster tells me what YOU mean", but I so didn't. I so did not. 

People who know me would probably say I'm upbeat, full of ambition, positive, optimistic but the truth is it can't possibly always be that way all the time...for anyone. It's not as easy as it may seem and everything is not "ok" all the time. There are days when it is hard to gracefully swallow the reality. Throughout my posts I hope that my condition will become less of a name and more of an experience. It's not meant to drum up pity or sadness for I have no use for such things and that crap is counter-productive, but perhaps I can paint a picture for the strangers who may be reading this or other fellow patients. So, what is HIBM, anyways? It's a part of me but not all of me. It can't be explained in just one post or one definition and the definition isn't as important as the experience. I'll keep sharing - I hope you'll keep reading and let's see how this thing turns out. :)

GreenGreenGrass - First Blog Post

I'm the one with the hat on the bike decorated with streamers :).. My youngest brother is right next to me. I actually remember this day vividly and the way that Michigan sun felt. 

So, why GREENGREENGRASS (name of my old blog)?

I hate shoes and if I could walk barefoot all day, I would. I've always been like that and perhaps that is why I never placed much emphasis on shoes as an adult - even if I had the choice to wear any shoes I want, and choices weren't so limited due to leg braces.  

Of course the cliche is we never appreciate the simple things until we lose them, and I am that cliche to a degree. I actually DID enjoy this simple pleasure when I was a child, though. I loved, loved, loved to walk through freshly mowed grass with my toes curling between the cool grass blades. At the end of the day I loved that my little feet were dirty and sometimes blistered. This showed it was a day of playing hard and nothing beat the Indian summers and the smell of freshly cut grass. 

I have three brothers, which meant I grew up a tomboy. My biggest memories are running around with them, sometimes till sundown, all dressed in army gear, holding our plastic guns. I miss this simple pleasure so much. Nowadays, I pretty much can't walk without my orthotics/braces and shoes on. I named my blog GreenGreenGrass, because most things break down to simplicity...it always goes back to simplicity, just look at nature and it's design. 

A couple years into my condition my balance was getting shaky and little things seemed to increasingly be an obstacle. I  recall a memory of my younger brother, Josh, poking fun at me as I was walking out of the house. "Watch out Kam, the grass hasn't been mowed. It's extra long today", he said. I think I fell trying to walk through grass one day and that is where this joke came from. It's also when I realized, "Oh shit, that's weird...grass is a problem?". Josh was of course kidding and when he would say this joke, I would laugh so hard that the muscles in my back would stop me from walking. That's the way we are, we make jokes of everything and so do I. If you can't make fun of yourself then you're in trouble. He and I soon graduated to the joke of him rolling small pebbles under my feet as an "obstacle course". Apparently I was in training :)

I digress. Anyway, that moment was a simple one...but it stands out. 

Because I had "it" and now I don't, I've become extremely observant. I see people differently, I'm aware of my surroundings because I have to be so I don't fall. I place importance on different things and I miss the feeling of running, the wind in my face and walking without having to think and planning EVERY SINGLE S...T...E...P. I miss it. I sometimes catch myself intently watching people walk or run and it is such an amazing thing to me. "How do they do it with such ease?", I wonder.  If I see a group of runners or soccer players playing I will stop and watch their legs and feet in movement. I break down that miniscule moment into a system and it's so amazing. It is almost like I am trying to remember and gain that satisfaction through them. Why must we love when it's too late and gone? 

I wouldn't say love something out of fear of losing it, because fear only holds you back, but love it because you can.  Most of the time we are not aware that we are living a special moment. 

If you're not conscious, then you're not alive whether you have a body or not and ultimately it is about observing observation. Really think about what it is to "see", the essence of what it is like to be alive. With that, despite the enormity of my struggle, I've never felt more alive and never have asked as much from life as I do now.

Please enjoy all the little things. Bask in them. Ridiculously relish in them even if it is a blade of nature in between your toes. Use it. Live it. Love it.