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.

"shit"

"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

6a00e5535294b988330162fbf05c4e970d-800wi.jpg

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

autumnlove.png

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.

Strings

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

Read More

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.

Week One

I completed my first week of therapy.  I signed up for a four day a week semester of therapy: 2 days aquatic and 2 days land based exercise at the Brown Center for the physically disabled in the Department of Kinesiology at California State University, Northridge.

From what I hear it is one of the best rehab clinics in the country with its 19,000 square foot indoor aquatic facility and a packed gym with every exercise machine you could need.

This week was good and it's nice to feel "active" again. I degraded alot during my time in San Francisco, and coming back to LA has made me realize how much so.  

As soon as I hit the gym I want nothing else but make due with the hour I am given.  An hour goes by really fast especially when it takes so long to transfer in and out of machines, into the pool, changing clothes, etc. I have an assistant although I'm not terribly friendly during the hour because all I want to do is workout.  I strap on my headphones and try to move as fast as I can and work as hard as I can.

I also completed my first week of Access para-transit service. Access transports those that qualify in the city's disabled transportation program. That has been interesting.

My first day was Monday for a 5pm pickup. I rolled out to the front of my apartment and for some reason felt jitters. As I sat on the curb I reflected back to my first day of school, holding my strawberry shortcake lunchbox and backpack while nervously waiting for my first bus ride.  It's weird to make connections to times that you think are over, and yet revisit you as you get older.  For the elderly who age and become like children again or for a young girl in her prime to feel like a first grade school girl again. It's interesting.

I've already met alot of "interesting" people, both drivers and passengers, and learning to adjust to the schedules of their pick up and drop offs.  

With Access paratransit:

1) It's possible to spend hours in the van for a location that is only 20 minutes away.  For example, if I have to be at my therapy at 4:30pm I should probably schedule an hour and a half in advance, so a pickup at 3pm is probably necessary.  But, there may not be a 3pm time slot open, so I may be forced to reserve an unnecessarily earlier pickup. They may only have a 1pm available and I'm forced to take it :/.  

In addition, I am not the only one in the van. If I get lucky I may be the only pickup and drop off and can arrive at my destination within an hour. But, there could be 2-3 other people in the van and they may get dropped off or picked up during my time in the van, which adds on my time in the van. It's a gamble.  

In addition, Access has a 20 minute window so they can be 20 minutes late after your reservation time., In reality I have waited as long as 2 hours for my ride to show up.  Many times you will probably be late for your appointment. If I book extra early then that means I will arrive to my destination hours early and be all alone for those hours which means I'm cringing and hoping that I don't have to go to the bathroom during that wait time.

Yesterday's transit is a prime example of spending alot of time in transit and the day not going right. I was picked up at 3pm with more than an hour and a half in the van so I missed most of my 4:30-5:30 swimming class. Then I had a 6pm pickup to go home but due to miscommunication they were nearly an hour late. Then it took me about 45 minutes or so to get home. A long day of 3.5 hours related to Access for only 10 minutes worth of swimming.  

When I arrived at the pool I wanted to get any exercise in I could so they loaded me up with ankle weights, threw me in the pool and I walked a consecutive 10-15 minutes in the shallow end (more difficult to walk in the shallow side). At least I did something.

Being at the mercy of others is in no way fun, and as some patients progress, and for those way beyond my level, they have to be at the mercy of others just to take a drink, scratch their nose and the list goes on for these simplest of tasks.  

Gosh, I really miss driving. To be alone with my own thoughts and in control of my tasks.  When I realized I had to stop driving back in January it was a day that I had been dreading for awhile.  I loved driving more than anything and it was the last bit of "running" that I was clinging to.

2) Sometimes, I feel like a bartender listening to the Access drivers spill their problems and complaints to me.  You know those times when you just want to be alone and not forced to conversate?  Well, I can't really do that during the ride as I'm sitting in the front seat right next to them, so ignoring is not an option.

For example, my driver from last night was an interesting one.  He clearly looked distressed, not confident, hated his job and drove all over the road.  He couldn't stop talking about how much he hated his life. I tried to help him by telling him to change his career and that there are always other options out there but seriously I just wanted to get home. I had been in the van for way too long and a bit nervous of his unpredictable and agitated behavior.  Perhaps he has a hard life and feels like there is no way out. 

There it is.  A brief synopsis of my first week in therapy and the transit service. Not bad.  All these new experiences may serve as material for future illustrations.

She Likes to Move It, Move It

Well, I'm very happy.  I was accepted in the Los Angeles Paratransit (Access) services, a transportation service for people with disabilities that offers door to door pick up and drop off.  A few weeks ago I was evaluated and then the city decides if I am a candidate.  

It may not seem like much, but it's a big deal to me.  I stopped driving at the beginning of this year and lost alot of independence. Not having the freedom to pick up and go can seriously do a number on your spirit. It's something we take for granted.  Like, going to the bathroom on someone else's schedule. I hate being at the mercy of others and that's exactly what it is.

There are a few logistics to I have to figure out in terms of getting myself to the curb to meet my ride. Like how do I get myself from standing position into my wheelchair, over my door threshhold, that's only 1/8" high but remarkably makes it hard for me to push myself over it, roll myself down, into the elevator, out the apartment complex door, into the handicap lift and down the ramp to the curb.  Sounds like alot of steps. Every step of every day has to be considered and planned.

I'm looking into different wheelchairs and still waiting for my sensor activated wheels (that will help with some of the propelling over thresholds and curbs). The front wheels of my current chair are proving to be too small to handle slight thresholds so, I need to improvise.

The paratransit service isn't a complete answer nor complete independence, but it's a  step toward more independence. Paratransit won't work for every scenario, but ithelps a great deal.  It's much easier to get around this way.  It's all new to me and every stage of progression throws me into an unfamiliar land of not knowing how to adjust.  It can be physically and emotionally tiring, but gotta keep going.  It has been great to come back to Los Angeles and see what friends are there to help me get through these stages. It's an advantage to see who is there for you when the chips are down.

In addition, today I start my physical therapy semester.  Every week it's two days land (gym) and two days aquatics. I'm very geeked. Lack of physical activity  means lack of endorphin release.  Without endorphins there's a chance of depression. When you can't get out of your house for some sun intake, the lack of vitamins can lead to sadness, too. An HIBM patient can't go crazy with exercise as it risks muscle damage, but something is better than nothing.

Lately, I've been trying to eat better and stretch and exercise as much as my body will allow me.  I'm even losing weight O-0.  It's been awhile since I've been in full workout attire. It's kinda nice.

If I'm not moving in some way, mentally, inspirationally, creatively, intellectually or physically, then I get down. So here's to getting up.