Don't Forget About Yourself


I've been meaning to do this post for awhile.  I mentioned since moving back to LA I have been focusing on physical therapy.  When I lived in San Francisco I did a bit of swimming and at the beginning stages of my condition I had been involved with physical therapy that was paid through my insurance, which means you only get so many sessions and your doctor has to prescribe a new one every time (Privatized insurance sucks).  

This place is different as therapy has come out of my own pocket. But this place is well-known and well-priced.  I just finished four months of therapy and I am on a break until the next session starts.  I've been doing it four days a week; 2 land (gym) days and 2 water days at a place in Northridge, California called 'Center of Achievement'; an extension of the well known physical therapy program at CSUN.

It was great.  It felt awesome to feel active and to be doing something entirely for myself.  The best part was AJ.  He was my aquatics partner. We grew into fast friends. I wholly appreciated the effort he put into me. He is good at what he does and most importantly personally cared for my physical well-being, sometimes, even emotional.  

When AJ sense I was having a particular bad day, even though I'd try to hide it with a more cheerful self, I could see it all over his face. He knew and would be there like a friend.  He seemed to really care about what he does and would think of creative routines to help build or maintain certain physical areas.  Swimming was probably my favorite because you can do things in water that you can't do on land, like walking without braces or devices. For that hour, I gain an insight of what "it" used to be like.  

Most of the time we would laugh during the session. I would tell him if I laugh I become physically incapacitated because it takes muscles working in cooperation to both walk and laugh at the same time. My muscles aren't multi-taskers.  So, I would do my best to focus. Sometimes in this hour I would take full advantage and day dream as if this temporary movement was my every day.  

If I was doing the water treadmill I would try and stay focused to avoid tripping. With eyes closed I would imagine myself walking down the street, down the sidewalk like a "normal" person.  It was a great place to be.

I can't express how important it is to get yourself physically active--in whatever form that may be.  Do what you can and if you are an HIBM patient, or any person with physical ailment, get yourself out there and move what you can.  With HIBM it's important to maintain what you have.  Even  though patients can't do alot of exercise, because it could damage and tear muscles, it's important to not forget about yourself.

I did. I should have been doing it all this time but I tend to concentrate too much on others.  Between the work I do with ARM, the organization that is working on a treatment for my condition, trying to be there for other patients, other people, engrossed in work, etc.,

I tend to forget about myself.  It's a good and bad trait, I know this.  I guess I can't help it. I sometimes hate that part about myself. Sometimes I wish I didn't care so much and was more selfish. I wish I concentrated on myself more, but like Jason says, I don't usually think, I just do.  

Feeling other people's pain and suffering or being inspired triggers the "doing" mode and my passion of "What can I do?" comes front and center.  

I've heavily neglected myself through the years.  It's hard enough dealing with the loss of your body, but helping those that are trying to get a treatment to surface, the burden of constant responsibility and accountability, feeling everyone's sadness and plight -- is all overwhelming, taxing and sometimes lonely. Because of the lack of help in this HIBM mission I feel overwhelmed.  

How do you help others and help yourself at the same time?  I can't in all good conscious walk away, but there needs to be balance.  And, that is what life is all about.  Finding balance and growth.  Don't be completely and unapologetically self important, selfish, but don't sacrifice yourself completely, either.

So, moral of the story? Keep calm and keep moving.  It's important to keep yourself going, because once this condition graduates to later stages you will have wished you would have done more to take care of yourself.

We may not be able to build muscle but the little bit we can work with will make you feel better.  The release of endorphins is needed and essential.  Keep yourself mentally and physically curious.

It's easy to make excuses.  When we say, "I don't have time" I think that is misused.  It's not that we don't have time, we just haven't made that particular thing or person a priority.

Thanks, AJ!   See you next semester.

Alas, It Was All Just a Dream


A recurring dream.

There are more than a handful of dreams that I have had since childhood and most of them have evolved over time. Many of them unpleasant.  

I was a little hesitant to share this one.  Dreams are so personal and if it fits into a certain box people assume the meaning of your dream.  For teeth falling out I believe it's something like anxiety of appearance, how you look to someone else or the sense of loss of control.  With sharing such popular dream themes I hesitated, because one, it's personal and two, it leaves an opening for assumption.  

Alas, I share, because I guess I don't care what other people think and we all have dreams that contain revealing elements about us. This one is definitely one of my more normal dreams. 

I'm not sure if the whole teeth thing is a vanity thing, but you never know.  

These dreams that I've had since childhood are usually ongoing and evolving and truly frightening. I'll save the gory details but I usually people I know aren't in my dreams. 

I believe I have always had a phobia about losing my teeth.  Not to the extent where I'm obsessive compulsive about brushing or flossing.

The teeth fall out, I chew them and it feels so real, it turns into powder and all of the above.  The dream is not so traditional where it is only about teeth falling out, this particular dream has other strong elements involved.  

Maybe this stems from being fully aware of people around me who had lost their teeth at a young age, including my mother.  Call it fear of loss or whatever. I don't really care to get analytical about it or told what I need to do less or more of something. I'm just sharing. I thought it would make for a cool illustration and express something different. I may illustrate some of these frequent and long lived dreams some other time.  

As I've gotten older I realize most of these recurring dreams are built around the fear of loss and abandonment, which is strange since I always thought that being adopted didn't really bother me.  

Like every child I went through the stages of trying to fit in. But I had to do it a very white community. These adolescent struggles never really seeped in me so deeply where it paralyzed me socially or emotionally, though.  But, I'm sure it has wormed its way into my subconscious and it's there. These dreams I've had since childhood, some of them are B.A. (before America).  

Before I was adopted I had a childhood in Korea, a childhood I know nothing about or even remember. Perhaps these lost memories have resided in my dreams throughout the years. Who knows. I try not to overly think it and I certainly don't want to waste time whining over it, because I had a decent childhood.  But, alas, these dreams I've had since then kind of speak to me and perhaps would work well in illustration form, since the fear of loss actually showed up in a very visual and real form; the loss of my own body.  The fear of loss and abandonment. I, like everyone hate publicly listing all my fears. But hey, we all  have them so there is nothing to feel embarrassed about.  

Prior to HIBM I was not one to sit and pour out all my feelings.  In fact, I hate such things and was quite the opposite.  My mother would fight with me for hours to express myself. 

"Why did I do what I did, what was I thinking, what did I have to say for myself" was out typical conversation. I would hold it all in. I always saw myself as extremely introverted, which is funny because most people who know me now see me as extroverted.

But I was always in thought and considered myself more of a loner in life. I'd rather keep to myself, because isn't it safer that way?  But, as we get older, it's no longer about safety, I suppose.  We all have a story to tell and from its own angle it's interesting and real and deserving of being shared.

Find Your Perspective

I seem to begin all my posts with, "Sorry, it's been a really long time since my last post..."

Well, I'm not going to do that this time. I'm not. Truth is, I have so much to share, in words and illustrations.  I have a back log of hundreds of drawing ideas, but we all know how it is. Finding the time is difficult and finding the excuse is easier ;).

I've been doing pretty well.  Really.  Been very busy while fighting some kind of being sick for the past four months. It's odd, besides my initial birth where i had all sorts of health complications, growing up I barely got sick.  My mother used to always say, "You never get sick".  I think she took personal credit and pride in that.  But, I guess we aren't twelve anymore.  

I get tired more often than I'd like, part age, part my hibm, but do my best to hold on to being able to do everything and anything. I just can't give that part up yet. I feel like hibm tries to wrestle me down...aha!

There's an illustration idea: a wrestler named "HIBM". What a schmuck. I envision what we must look like in the ring. I'm sure my costume is way cooler than his.

The other day I fell. I fell right in front of my bathroom door, right next to my bedroom door.  I fell backwards, flat on my back with my walker perfectly straddled over me. Don't feel bad. By now I'm an expert faller. I haven't fell in a very long time and it was a silly little step that threw me off balance. I was particularly mad and obsessing over that little misstep, because I had too much on my agenda that day and falling is a nuisance.  A waste of minutes.

Feeling too weak to roll over and attempt the whole drama of sitting up, I just laid there.


"really?", I mumbled.

I stared at the ceiling.  "Huh, a new perspective", I thought.  It only takes a fall to see something new.

I texted a friend from down the street. Her name is Sonya. I hired her when I moved back to pop by a couple times a week for an hour to help out and in general someone who I could call in case of emergencies.  I try not to rely on her for too many things so I can maintain my independence, but she helps me with little things; when I need a ride or get myself in a pickle like today.  It's been invaluable having her available and willing to come when I need something.  

"I'll be there in 20 minutes.", Sonya texts.

I soaked up the scenery of my door and ceiling.  "Oh, so close", I kept thinking. I was nearly out the door.  It wasn't a terrible fall. Ironically, my walking is far from being graceful, yet my falls make me look like I'm a feather dropping.  

Seemed like a perfect situation to make my doorway into a drawing. After all I had spent a good amount of time lying there.

In my drawings my lines are ragged, a bit jaggedy.  I remember my very first illustration a year ago and I was annoyed that my lines weren't perfect, yet shaky. But then I realized I've never been able to sketch perfect lines even before HIBM began.  Not even in ID school.  My hand shakes a bit when I draw. I decided just to go with it and let that become my style.  I'm not perfect, so why should my lines be?

I imagined my door, walls and cupboards as buildings, and there I was walking in the sky.  I was looking up at myself or was it, I was looking down at myself?  Imagination is very important.  I think we focus on grades, intellect, education, and in school we sort of teach ourselves out of imagination, but imagination is a very important tool to have in life.  Don't let go of it.  I don't need to go on about that.  I'll leave that to Sir Ken Robinson. I recommend his book Out of Our Minds.

When I don't have control, when there is nothing in the world that can change my circumstance, I imagine myself out of it. After all, as much as I'd like to, I can't escape my problems. I literally cannot run away.  Sure, I could avoid them, like most of us try to because we don't want to deal with anything bad, or I could take up a vice and get lost in overeating, working excessively, drinking, constant partying, drugs. This is in no way judgement to those that do. Every one of us have our escape routes handy in case we need to jump ship.

I guess for me mine is creativity and "doing".  Creativity keeps me grounded, sane, more alive and will things possible.  It's all I have in these moments. I want what I can't have so badly that I say, "Screw you" and imagine it up myself.

If I saw it exactly as it really was, such as this situation on the ground, it would only make me cry and frustrated.

Humor In Struggle

There is humor in every struggle.  Sometimes, I wished I had a camera on me.  I feel like some of the moments are too good not to share.  Even though it may bring about frustration or momentary despair the positions I get into when doing the simplest of tasks is both cockamamy and befuddling.

Like just now. I was walking over to my wheelchair so I could wheel myself to the curb to wait for my ride. As I let go over my walker to lower myself into the chair I was gripping onto the kitchen table for dear life. I somehow missed and only an 1/8" of my butt caught the seat.  I'm not sure how this is possible since I have a huge bottom.

Nevertheless, my heart stopped, my defunct legs stretched out and with my back slowly giving out on me, my neck was having a hard time holding my neck up.  

"Lovely ceiling", I thought.

I could feel myself slipping out of the chair, "Shit, I don't want to miss my ride to physical therapy", I thought as my limp body laid there holding on for dear life.

"I only have one shot. If I mess up then I'm on the ground and there is no way I can get back up."

Usually I have to get creative and use every piece of my body and brain to push myself up.  My movements are merely millimeters but all contribute to the grand success.  My legs are dead and I can't even move them to help give rise to 1/8" butt covered surface to say a 1/2".  I do my very non-sexy grunt and groan. By this point I'm just plain upset that I have to be in this situation. 

But seconds count as loud as any siren.

I don't know how I get out of these situations but once I do, nothing smells as sweet as that victory. So, size doesn't matter. It's relative. It's small, yet big and afterwards I celebrate alone.

Sometimes, too happy to stop and be upset about it

Sometimes, with a couple tears.

Sometimes, it's with laughter or humor.

Sometimes, Suntory time??

Even though it's hard, you never know yourself better or have more of an intimate moment with yourself than in the stillness of a struggle surrounded by tumultuous placidity.

And now, I'm on my way out to catch my bus to physical therapy.

Hour-long Three Minute Ramen


Since returning from my two week out-of-town-wedding-fest I've been recovering. It always takes me awhile to recover after a trip.  I came home pretty exhausted, sick and tired from the traveling as well as all the bridesmaid and sister duties. I feel like I am back at square one and trying to build myself back up again.

It just took me over an hour to get up from my desk, go to the bathroom, make a cup of ramen noodle soup and shuffle back to my desk.

Imagine spending over an hour in slow motion, paranoid of falling with every step. I hate the feeling and dread each journey when it comes to accomplishing a task.  It sounds strange that it could even take so long when I cook up complex dinners for large group of friends. For those, I have my sous chef Jason, a routine and everything is propped up, including me, like a staging area. With someone near me I can create mountains of food, yet alone simple tasks like cooking microwave ramen and getting it successfully to my desk is my arch nemesis  

It is sort of funny but painful at the same time. I'm stubborn and try to beat "it" as if nothing can stop me, but it quickly puts me into my place.

I'm stuck between sort of walking and not. 

Even though it takes forever to do such a small task I must do it to maintain what walking ability I have left. Iit would be so much easier to quit.

By the way, all that effor and the ramen sucked.  To be expected, but alas the only thing I could make on a tired day like today.

Michigan Autumn Love


I've been in Michigan, my hometown, for the past week thus my absence here. Both my brothers scheduled their wedding in the same October week. I have alot to share but for now trying to drown out any usual stress or demands from every day life and enjoy as my brothers step into a new chapter. That and basking in childhood memories among this beautiful Michigan Autumn weather.

I'll be back soon to share.

I Spend A lot of Time Thinking About...

I'm sitting in an airport waiting to be on my way. People watching is my favorite thing to do. I think it is for many of us, right? 

I spend alot of time thinking about...

the lives of the people I pass on the street; where they're going, where they're coming from, who is it they really love and why are they with someone when they don't. Who they are going home to, why they did it, what is their motivation, what scares them the most, did they really mean to do it, what were they like as children and why did they run in the opposite direction. How many of them will meet the stranger they just passed at a future moment and how many times has that happened. I think about how each person's steps is in sync with their own heartbeat. I think alot about floating particles, how old they are and their journey.

One comes to their own self awareness through collective thoroughfares, each one its own puzzle piece adding to the completion of a scene only to be part of another scene.

I'm quite tickled by story lines and motivation. What makes them do it. What made them take a shortcut or what made them take the hard route.

I spend alot of time thinking about people whom I've never met.


“One of the basic things about a string is that it can vibrate in many different shapes or forms, which gives music its beauty."

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Pick Up and Go

I'm so frustrated with the logistics of getting around. That's the difficult part of a progressing condition, especially as it nears going into a chair or beginning stages of one. A affects B, B affects C and everything thereafter. Any little change in a situation changes the entire plan.

I had an old pair of e-motion wheels loaned to me. These are sensor activated motors in the hub of wheels that assist my propulsions. My arms and hands are two weak to push a manual chair.

Last week I was able to successfully get out of my apartment door, into the elevator, out the lobby door, into the disabled lift, down it, rolled myself down the steep ramp and onto the curb all because of the wheels. All by myself. It was nice. I felt like independent hot stuff

But, today they aren't working so I had to have a neighbor come let me out. I have physical therapy from 6-8pm for the next few weeks so I scheduled my Access (paratransit service) to pick me up at 4:40 pm.

On a typical ride to my weekly therapy it can range from a 1.5-2.5 hr trip due to shared ride policy. However, today, Access got me to my therapy in 20 minutes.

So, here I wait an hour early, usually an hour late, in the lobby unable to push myself around because one of the motors are broken. The wheels are really old, so I guess it was going to happen. Crap thing is I've been waiting for these loaner wheels for months so I could gain some independence. I finally get them and then they die right away.

Oh well, heightened independence was great while it lasted. This is how it is for everything, every minuscule chore. It's not just this situation I find frustrating, it's the entire package. It's grains of rice that lead to the entire harvest.

Frustrated. I despise the loss of freedom, the incapability to pick up and go. It's really something wonderful to have this privilege. I despise depending on others to accomplish the most minute task. 

I know I'm supposed to try and friend you, but the truth is, I hate you HIBM. My only desire to is to pick up and leave you and yet you hang around tightening your grip on me. At times I feel jipped. I did everything "right", so what happened? Unbeknownst to me, you were always lurking there, you waited, and then suddenly you hit me at the most productive years of my young life. You jipped me. You have shocked me for the rest of my life.

This is a recent response. I didn't used to feel this way. I've not a, "Why me?" person, because why anyone? Perspective tells me I'm ridiculous but the "moment" tells me to feel this way. You can have clarity and yet at the same time the sensitivity of a moment can be so great that you can't see beyond your own soaking eyes that reflect some obscure amber version.

Emotions, humility and feelings work that way, I suppose. They do not obey.