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.

Skid Row, Los Angeles

One of the most pleasurable experiences is being pleasantly surprised by a person while meeting unexpected people in unexpected places.

MNM

Our apartment leasing consultant is Mel and the week we met him happened to be his first week on the job. Nice guy whom we saw and spoke with several times over the course of viewing the potential home and signing the lease.  

I can be a bit sarcastic and personable, so we got to know each other pretty quickly.  He talked about clubbing and skydiving, and by first looks he looked like a typical happy guy who likes to have a good time.

The day we moved in he handed us our keys and said, "Hey, I have this charity called, Monday Night Mission, find me on facebook and friend me and the project." I thought it was great and looked him up right away.  

I guess I don't know alot about Mel except he has a thing for Dora Explorer, good sense of humor, proud to be Sri-Lankan, loves sky-diving and laughs alot...and apparently likes helping people.

SKID ROW

About 6 months ago Mel began Monday Night Mission. As he was driving home from a night of clubbing and debauchery he found himself lost in downtown Los Angeles, right in the middle of Skid Row. He had never been there before.

Shocked by what he saw he quickly stopped at the closest fast food spot, ordered 10 sandwiches and went back to hand them out. He could only feed 10. He felt ashamed standing among the disappointed faces.  

The next weekend he decided to gather a couple of buddies to feed more, but simultaneously worried that his friends would feel the disappointment when the time came to say, "I have no food left".  

He came across Mother Theresa's saying, "If you can't feed 100, feed one" so that week he gathered 3 of his friends and gave out 72 sandwiches.

With the coined phrase, "People don't live on Skid Row, they die on Skid Row" the 52 block enclave is known as the homeless capital of the United States - projecting anywhere from 4,000-11,000 "residing" homeless, depending on the census year. The number of homeless on any given night in Los Angeles County has reached 90,000.

For many people living in Los Angeles, Skid Row embodies the phrase "out of sight, out of mind". Beneath the land of endless opportunity, beaches and the Hollywood scene underscores the issue of cardboard boxes and tents lining the streets each night, until sun-rise when they are forced out by the police.

The homelessness, drug abuse, prostitution, violence and mental illness that continue to thrive on Skid Row has successfully been tucked away within this 52-block concentration of shelters, missions and other social services. As a result, it has remained out of the eyes, ears and minds of the majority of Los Angeles residents.  

This Skid Row area was once known as the agricultural hub after railroads were introduced to the area in the 1870's and a station was built just blocks away from Skid Row’s center. 

With railroads came the industrialization of agriculture. With agriculture meant work was seasonal and short-term, and therefore, so were the workers. With railroads, means transient culture and crews would lay over near the downtown railroads.  Hotels, bars and brothels popped up in the area to entertain and support the single, adult male population stepping off at the railroad station who worked for brief bursts throughout the year.

During the Great Depression that overtook the 1930's, LA became a promised land for the millions of the unemployed and broken down. For the displaced farmers and migrants.  Many from midwest and south rode the railroads to LA only to find there was no work there. Much of the elderly hobos are the base population currently residing there.

In the 60's the area went from the temporary worker community and Great Depression victims to a resting ground for Vets returning with addictions and deeply set trauma. Unable to re-emerge with society they retreated to Skid Row as a haven.

Prior to 90's recession the landscape was primarily single and male, but now it has taken on a new look once again - growing in numbers of single family, particularly single moms and children.

---

Monday Night Mission

Every Monday Mel gathers people to give out food to those turned away from Skid-Row shelters.

Midnight Mission is one of the oldest continuously operating human services organizations in the Los Angeles region with 95 years of opening their doors to those in need. But, even they have limitations and have to turn people down, only allowing 95 people in a night.  Mel wanted to feed those that are turned away. His cause, Monday Night Mission, is not funded nor given food or supplies. It's just Mel gathering people on a Monday night and volunteering on the streets.  

Monday the 5th was Labor Day, a holiday, but rather than drinking beers and causing a ruccus with his buddies, Monday Night Mission was still in play.

Jason and I decided to participate. The cause is great and I felt compelled to show up and support his passion.  

The usual schedule?

Anyone who wants to participate meets up Monday at 7:45pm in the Burger King parking lot at 700 West Cesar E. Chavez Ave, Los Angeles, less than a mile from skid row. 

As we pulled up to park there were other cars already waiting. As more started to trickle in we all got out of our cars and Mel was there to direct us. He had us all get in a circle to introduce ourselves.  That night he had 40 volunteers show up. I was really surprised. One very passionate person was able to reign in that many people. Mel isn't attached to any big organization name, nor was his kindness due to an organized church event telling him to do so. It was on his own and because he saw a need he decided to help in any capacity he could. Most people see need, but fewer take the initiation. I guess that is what I wanted to support.

First thing I noticed right away about Mel was his ability to remember everyone's name.  Every time someone new showed up to the parking lot he would go around the circle and list everyone's name - names of people he had just met that night.  

I don't know about you, but I have trouble remembering names, especially if it is our first time meeting and especially if I'm meeting 39 people at once. Mel introduced everyone and explained what the protocol of the night would be.  He also wanted his cause to be about introducing other people's causes and introduced me, what my condition was and the organization, ARM, that is  trying to propel HIBM treatment to the surface. He explained to his fellow leasing consultants in the crowd that though most of them try to avoid his tenants but we were tenants that he actually wanted to know. I was really touched. I was touched that he cared enough to expand my plight to his social circle and encouraged them to spread it to his social circle. I'm touched that he goes out of his way to think of ways to fundraise for HIBM and I've only known him a couple weeks. 

Skid Row

The plan of action was to carpool from Burger King lot, follow him in a single file and park right in front on San Pedro Street, the center of Skid Row. Then quickly hop out, stack the food and start handing it out. The whole giving process would take 40-45 min. For many this was their first time with Mel or doing charity work in general.  He told everyone to not to be afraid, nor expect a "thank-you".

I believe 8-10 cars packed pulled out of the Burger King parking lot took a right onto Cesar Chavez, a right onto Broadway, a left on first street and a right on S. Pedro street. All 8-10 cars pulled up one by one, single file in front of the crowds of Skid Row residences. We were about 4-5 cars back from Mel and it took us a little longer to get on the sidewalk because of the wheelchair, but as I rolled up, as quick as that, Mel and team had already piled up cases of water bottles to be used as a barrier, and stationed bags of food behind.  

Mel was agile and alert. He used himself as a human shield and directed all the volunteers to line up behind him as he coralled the starving crowd. The crowd seemed to know the drill. Get in a line or no food.  As soon as they did their duty we did ours right on the sidewalk, right next to where they sleep.  

One particular situation stood out in my mind. A young homeless guy, my age, started yelling at an elderly gentleman who was not following the rules. Mel stopped the giving process and told him to get back in line so that we could proceed.

The young gentleman yelled, "Come on guys! Get the fuck back into line, let's all work together or we won't get fed".

Mel said the first couple weeks when he started giving out food they had to search for people and tell them to take food. Not every homeless person is looking for a handout.  But, week after week as Mel and his friends showed up, the homeless community knew the consistency and the drill and followed accordingly.

I was really impressed with Mel. He was confident, in command, deliberate and keeping watch knowing that it wasn't the safest of situations in the streets.  He called us volunteers up by name to give with our hands. One, to give drinks, one to give sandwiches, one  to give cookies, chips or fruit.

Despite the chaos he made it a point to make sure every volunteer that had showed up in that Burger King parking lot was able to go to the front of the line and literally hand an item of food to homeless receivers. That was something that really impressed me. That he cared enough, and knew the names of every volunteer, to make sure everyone that had showed up physically gave from their own hand. He even brought up one of the volunteer's son to come up. I loved that.  How awesome of a mom to expose her young 8 year old child to charity and those that are less fortunate.

There is nothing worse you can do for your child then spoil them and give them everything. There is nothing better you can do for your child then make them work for what they receive in life and show them those that struggle.

The food was being passed fast and the block filled up with people while the glaring red of ambulance sirens blanketed the streets and our ears.

Then it was my turn and with every sandwich or drink I passed out I could feel the strain in my shoulder and arm but did my best to place it into their hand while making sure to look each one directly in the eye. At one point I was carelessly rolling outside our densely populated volunteer crowd and Mel verbally pushed me back into the line. I hadn't realized the danger of the situation, I guess.  I mean, I knew it was dangerous, but wasn't as timid as I should have been.

As the food was nearing its end Mel screamed out to the volunteers behind him, "Everyone get into your car-food is running out!"

And that was that, in guerilla form-as quick as we came, we single-filed out of Skid Row leaving behind 200 people that were turned down from the shelter but now fed. We left the red sirens filling the San Pedro street and headed back to the Burger King parking lot.

For every face there is a story

I was very impressed by Mel. It's really hard giving up every single Monday night for someone else let alone groups of people whom you don't personally know.  It's hard being the head of a nonprofit and seeking volunteers. It's like a 24 hour job of begging people to help, lots of responsibility and accountability. I know from experience. While most of us spend our time running from responsibility and accountability some run towards it.

Prior to going, I wasn't quite sure what to expect from Mel's Monday Night Mission.  I have worked in  many homeless shelters but this was slightly different than what I had done in the past. This was right in the streets and not in an enclosure.  

For Jason, my husband, this was his very first charity act, besides standing alongside me for all the ARM mayhem.  

For me, I'm actually quite versed in homeless shelters.  I had done a ton of volunteering when I lived in Detroit. I didn't even tell my parents because I thought they would be scared for me.  I used cook and give out food in a shelter,  paint houses in low income areas and even a driver in a program that transports drug addicts to their monthly injections in clinics located in impoverished areas. I actually didn't grow up being taught to volunteer or be kind with service to others. It wasn't a normal event in my household yet something I searched for and was curious about. I don't think my parents ever took us to a charity or homeless shelter but growing up I knew that was something I wanted my future kids to learn and know about.  Nothing good comes from sheltering your kids from what is common for many.

My brothers and I grew up in decent income, Michigan white suburbia. We were fairly sheltered. Detroit was not somewhere we visited as kids. But I moved there for college and for four years I involved myself as a volunteer within the community and had experience from other volunteer organizations I worked with outside of Detroit. 

I liked that Mel didn't judge those who put their hands out for food who weren't even homeless. He gave without judgement.  

It's easy for us to say, "Well, they are addicts, lazy..." and while that may be true for some, not everyone can get out of their situation.

As a country we treat drug addiction like a crime and offer no real culture or programs in treating addiction. We don't treat those with mental illness. We send men and women to war, many of them proxy business wars, and when they return with PTSD, mental illness and develop addiction as a coping measure - unable to work - we allow them to live in the streets uncared for. And when I say "we" I mean government on both sides of the aisle. Corrupt politicians famously exploit the most impoverished areas, making it even harder to climb out of poverty. Corrupt politicians push favorable policies for corporations and the greedy, making the taxpayers pay for corporations employees' medical and living, like Walmart does, while corporations receive welfare and tax breaks, getting richer. We also have the  most corrupt and expensive healthcare system in he world. The top three reasons for bankruptcy is medical expenses, job loss and divorce. Corruption is hard for any normal community to move beyond but when you're poor it's ten times harder.

My point is poverty is not all laziness. It's also a derivative of badly allocated money, systemic corruption and a sense of selfish greed who buy their way into making laws work for the few at the top. 

Poverty and homelessness is not so black and white and it doesn't represent every person in the situation. Not everyone is as fortunate.

There are multiple reasons people find themselves homeless.  

For many it is a perpetual cycle. They were born into abuse, homelessness, addiction, mental disability, physical disability. An injury, an illness, a fire, or a car wreck can send people hurtling over the edge. If you're life is shit you're going to turn to drugs/alcohol to cope and that becomes your spiraling downfall.  I mean, come on most of LA is on drugs or intoxicated, many of them privileged individuals that came from privileged backgrounds, to deal with problems that don't eve match real struggles. The only difference is they have someone to bail them out and support their lifestyle.

There are even reports of police from other jurisdcitions dumping their mentally ill into Skid Row because their city just isn't equipped with services to take care of their citizens. Many mentally ill swarm the streets without understanding or care because we don't want to be near anything we don't understand or are afraid of.

Five, six, seven years ago there weren’t any plans to gentrify Skid Row with condos and lofts that sell for $700,000 or more with a Grand Hotel a few blocks away.  The rich don’t want the homeless to be in their neighbors and so the homeless in Skid Row are now getting pushed aside.

Solutions for dealing with the homeless on Skid Row: arrest and jail them for any minor infraction, from littering, for public urination, for sleeping on the sidewalks. It’s a strategy that wins the applause of the business community and real estate developers. As a result of this strategy, city jails are bursting at the seams with the homeless and cannot take in any more. County services for this population have been scaled back, and charitable organizations are severely understaffed.

LA is also quietly shipping Skid Row homeless and dropping them off in San Bernardino because they make the new Cosmopolitan Downtown LA look bad.

Veterans from Iraq and Afghanistan are finding themselves living on the streets faster than those who served in previous conflicts, including Vietnam.

Shannon, a soldier from 1957, got hit by a bus and sent his current injury spiraling down even further as he lays on the street next to another disabled man who is rolling dice with the rodents.  

Kenyon with spinal infections and kidney failure unable to pay her medical bills or Daniel who used to work as a manager in retail stores for nearly two decades, but after suffering herniated disk in 1988 had to have surgery and was out of work for four years. After returning to work he was diagnosed with a tumor in his back and told he could not continue working.  He went from making $70,000 a year to being homeless because of a herniated disk.  His career was built around walking and lifting and once that ceased he had no options. He and his daughter are both now homeless.

Khadijah grew up in the streets of Skid Row along with her mother and sister. At the age of 6 they began moving from Skid Row shelter to shelter. Attending 12 different schools in 12 years she is someone who appreciated and understood the value of working for her education and is now a Harvard student. But not everyone can get out like this.

Ron Roberson came from an abusive household, tortured, in and out of foster homes and resulting in his own addiction to crack cocaine, despair and then homeless in Skid Row where he went to die. Today he is an Anchor for CNN headline news. But again, not everyone can do this. 

These are real people and real stories that landed unsuspecting people into homelessness.

The problem is complex and there is no simple or quick solution.

People always tell me, "Don't expect anything from people", which is true, but underneath what I do hope for is for them to want to expect more from themselves.  There is so much potential wasted, with fear as the triggering culprit.

You don't have to help the homeless or a rare disease cause but give yourself to something outside yourself. It's important and you may just save someone's life, both literally and figuratively.

If more guys like Mel gathered their friends to help someone for one night rather than party, think of what could be done.  What Mel is doing isn't going to solve the gamut of the problem and may not save the receivers' life, but at least on that Monday night the natives know that more than 30 people are showing up with warm food, water, some clothes and showing that they are not only thankful for their own lives but extending their gratitude by passing it along.

Mel's Monday night Mission is serving on Monday AND  NOW Thursday night.  For more info visit their page: Monday Night Mission

The measure of any society is how they treat their weakest element. How we do anything is how we do everything.

UPDATE: Monday Night Mission now volunteers 5 nights a week and Mel gives up every Monday, Tuesday, Wednesday, Thursday and Friday night for Skid Row.

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. 

Marlene

A little Marlene Dietrich for hump day.

"Courage and grace are a formidable mixture.  The only place to see it is in the bullring."

"It's the friends you can call up at 4am that matter."

Be there for someone today.  They may really need you.

Deserted

On Sunday I wanted out, so on a whim we took a drive out to Joshua Tree - about three hours from us.  A desert seemed like a fitting place to visit.

It was my first time visiting Joshua Tree. I picked it out of a hat and off we went with plans of doing some drawings in my sketchbook.  I really enjoyed it. It was dreamy. Another land and the trees were like old men populating the land. Stories were told.

Whenever I'm feeling blah or bored all I want is to take off somewhere, as much as my body will allow me, and do anything to perpetuate creative inspiration. Creativity, it is seriously the only thing that saves me. Since, I can't hike, I sought for other inspirations. It was good.

Desert Bound

I'm off to the desert with sketchbook in hand.

GreenGreenGrass on Tumblr

I started a tumblr awhile ago.  I've finally attached it to my blog and will do my best to actually post stuff in it. I wanted a simple spot where I could do quick posts of things that I find cool or inspiring.  Afterall, I have other things to talk about than my cane, wheelchair, orthotics (left one named Charlie. Right one names Bucket) and the like. 

www.mygreengreengrass.tumblr.com

Dorsal Interosseus

I started this illustration awhile ago.  I just finished it. It is meant to be a wall piece, each one its own framed panel. Mix and match as you please.

With a progressive muscle condition there are major and minor milestones.  Some that are noticeable to others and some that can only be experienced in the most intimate moments.

I can physically feel the depletion of my muscles. It can be deciphered tactilely. I can detect the growing loss through increased difficulties of both major and minor tasks, and I can even visually see the loss.

HIBM, although a wasting condition, it's not the type of condition where the body wastes away to mere skin and bones. At least not to the extreme like other conditions. So, to most I look perfectly healthy.

I generally experience the loss through weakness, but rarely do I visually notice it on my own body. I guess because I'm with myself 24/7 and don't stare ay my body all day (I know, how could I not? ;)  There are little things I notice. For example, where there was once muscle in my thighs and triceps, it now has degraded to flappy, fatty, droopy skin. At least I notice, no one else may.  My thighs have gotten heavier, fatter. I know, I know as one gets older this is supposed to naturally happen but there is nothing I can do to influence the situation, unlike "normal" 30 somethings that could hop on a bike and work it off. 

There is less muscles to absorb the calories one intakes, so it turns to saggy skin. My triceps are like this. They hang lower and lower and if you feel them there is barely anything left.  

A few months ago my friend was stretching me out.  I've decided to take time to focus on my health. I rarely do. I rarely put myself or my pleasures first.  I normally am too busy doing for others.  It's a good thing but also a mistake.  I just moved back to Los Angeles and as part of my new location I signed myself up for a four day a week therapy program. Besides that I do my best to either have someone stretch me out or do my own daily stretches by myself.  

My friend Joey was stretching me out and he started rubbing my hands.

"You have no muscle between your thumb and index finger," he said.

"Huh, I had never noticed that," I said while gazing at my hands wondering why I had not noticed it.

The area casted big shadows and pretty much was hollow with only skin connecting my fingers. Like a web of skin. The muscles, Dorsal Interosseus whose primary function is to flex the metacarpophalangeal joint, occupies the space between the metacarpals must have decided to take a vacation. They left me.  No Dear John letter in sight. Nothing. I was more surprised that I had not noticed it myself. That's when I started doing this drawing.

It's fuck'n amazing all that goes into every breath, every step, every movement, things that we will never take notice of or give a round of applause to. The body is in constant work mode even when we are at rest. There's no possible way to notice every second and really appreciate the amazingness that happens inside our own body.

I'm not here to preach about how we should appreciate everything. Yuck, who likes preachy people?  Afterall, I still don't appreciate every second of my life. I would say I do take notice and appreciate way more than ever, but it gets away from us.

The friends I have that really take advantage of their bodies and talents, I admire and watch them from afar.

When I say we don't appreciate things when we have them, I don't just mean "appreciation" as in indulging every physical pleasure one can get their hands on. I mean appreciation by noticing those that don't have and extending ourselves to others.  If we fully appreciate, we pass it along to others rather than going on about, "How lucky, how blessed I am". It's like pushing down the gas pedal as the light turns green, leaving those temporary thankful thoughts to the wind.

Even though I have really bad days, days that I don't think I'll be able to drag myself out of the continuous loss and would rather retreat for forever, I know I have to slap myself and not make it just about me. It's not just about me.

With that, I'm not here to hide the fact that it can be deeply saddening and there are days I feel like I will never quite get over the loss. I miss the physical movement and I know every other patient does, too.

Fear Is Normal

Fear is normal. It's not about ruling your emotions. It's about working through them. 

"Ultimately we know

deeply

that the other side of fear is freedom"

TushPush.2000

This drawing is kinda old but just getting around to posting it. There seems to be much bathroom talk on this blog but don't worry, I will spare you all the gory details.  

We never seem to recognize the mundane routines of our day to day, until it stares us in the face and commands utter and complete attention.

"Look at me, look at me!!"

There's been many times where I have found myself stuck on the toilet pleaing and crying to my body to, "Please get up, you can do this".  

Throughout my days I absolutely dread the Porcelain God and that nagging urge to peepee.  I would literally be in FEAR of this necessary routine. 

As my progression has evolved the style in which I rise from the toilet has evolved over time.

I remember that day in Dr. Seidel's office in 2002 when he asked me, "Can you get up and down from a seated position?" as he filled out my chart with checked boxes and notes.

"Ummm, well yea, why wouldn't I be able to?" I thought, as I arrogantly demonstrated getting up and sitting down on his office chair without a blink, without assistance, without even holding onto the arm rests. I could do this all day" I thought as I reveled in the things I could do rather than what I couldn't. At this time the list of "can't" was much shorter.

Over time this has obviously become more apparent and my getting up and down has become slower to non-existent.

I've adopted the style of using my hands, arms and legs to push myself up from a chair. Sometimes I have to literally throw my body onto a table - that I use as leverage - with my face squished onto the surface while I slowly and ever so carefully push myself up while being forced to consciously utilize every muscle available.

Even thinking about using a public bathroom has become a nightmare.  A year and a half ago I could use the public bathroom at my work. If I am familiar with a surrounding I can wiggle and create a magic routine until my body gets used to the situation. My left hand grabs the handicap bathroom rail, my right hand resting on the toilet seat pushing my body up at an angle, and as soon as I feel my hip lock, with every muscle I have left, I could push myself up slowly with an assistive and constant mutter, "Please don't fall, please don't fall."

Nowadays, going to a public bathroom alone is non-existent.  However, my home is a place I can have a little more control over and outfit to my body's changes. When we move (which we do frequently) I have to take into account every new bathroom. The size, what I can grab on, what I can lean on, etc..

My last bathroom in San Francisco was pretty small, which was a good thing, because I relied on the wall and the door that was situated right next to the toilet to assist me up.

When I first moved into that place my bathroom style was to grab the doorknob with my left hand, put my right hand on the toilet, wedge my foot in between the door and the wall which allowed me to  pull the door closed while lifting. The door was my leverage and my foot the barrier that I could use to push my against the door and use as an extra weight to push up on.

This was shortlived. The toilet was too low for me to get up by myself.  Onto plan W.

I bought a plastic toilet rise that gained me an extra 6 inches of height. This was less height for my legs to push up from. This worked for a very short time.  My wrists had gotten weaker, along with my legs, and I would find myself stuck on the toilet, alone - crying to myself and to my little Pippi in the most broken hearted sob.

I had alot of downtime to think in the bathroom. I created stories in that very quiet space imagining the bathroom tiles, the light peering through the window, the walls, as something more than what they were.

I soon put a wood stool in front of me, so I could lay my stomach on it and push my body onto it while lifting with my legs and arms. The stool acted as steady table, much like how I use my desk to assist me up. This became a tricky scenario and each time I hoped I wouldn't fall. I made it up each time by the skin of my teeth.

My latest bathroom style is this very wonderful electronic toilet lift.  I didn't know it existed.  I push a button and it propels me up towards the heavens in a very slow, yet breezy, adventure.

Weeeeee!  

It's called the Neptune Toilet Lift but there are many different versions that do the same thing. I seriously fell in love with it when it arrived in its great big cardboard box. It was like Christmas. I now need a $2500 lift to help me go to the bathroom. People don't realize how expensive it is to be disabled. And I'm not disabled due to "laziness" or one "looking for handouts" but unless you're disabled or have a disease you don't know what it's like. Private healthcare is corrupt and they won't cover a lot of things and the things they do cover they battle you on. And durable medical guard, just like big pharma, has huge markups. Not all disabled people can work nor do they have family or a spouse to help so imagine what they go through. 

I wanted to hold hands with my Neptune. I loved it that much.  It became more than a piece of equipment, yet a doorway to some independence. I personified him as "tushpush.2000".  Christmas in July, indeed. I thought I was pretty neat stuff rising and lowering in the air.  Where there is a will, there is way. Don't ever give up.

I'm Going Going, Back Back, to SoCal SoCal

My younger brother and sister-in-law flew in from Michigan to help us move all our stuff back to Sunny Southern California. Road trip! So excited to go back.

Grandma = Cooking Up Love

I'm the one to the left with hands behind my head.

I know, this is supposed to be a blog about disability and my thoughts on it, and yet there's always all these food pictures on here. How does that relate to disability? I know, right?

Well, it does, because it has to do with the person living out the disability and the disability itself.

I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.

As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard.  My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours, I was still in the air. 

Like many grandmas are, she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandma's love for her "open door" policy -  as she greeted guests with welcoming arms.  She always had some kind of dessert or Entenmann's in the bread box for those "just in case" visitors.  She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.  

Holidays were always a big deal and her Thanksgiving dinners are something I really miss. She cooked everything. Every year she would make as many as nine different pies - all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. Only being able to stand for shorter periods, she would make the squash, cranberries, etc., earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday.

I remember she would scoot around the kitchen in her walker and when I'm cooking, holding onto something I love but refuse to compromise quality, I experience what I saw in her.

My grandma didn't like to sacrifice a dish so  she figured out ways to outsmart her body. I myself have adopted this tactic I sometimes cook big batches and freeze it. Or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I usually cook over an entire week, doing a little here and a little there. It cuts down the stress on my body as it progresses and can't handle as much.

This past thanksgiving I even made two Thanksgiving dinners. I had already promised to help my upstair neighbors/friend's thanksgiving. We had agreed to do it together since she is the sibling of one of my best friend's family from LA. Their parents are some of the most loving and amazing folks I've met. True big latino family with an inclusive-like vibe. Reminded me of my grandma's style I grew up with. 

My suddenly-visiting-brother doesn't like to share his holidays and would only come up from SoCal if I made a separate Thanksgiving for him so I cooked two Thanksgiving dinners. Don't mind if I do.

As I spoke during my grandma's funeral I recalled our disabled mock races.

Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker.  Neither of us were in good condition to be helping each other but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she.  I was young, she was old.

I guess I would have to credit her with some of my characteristics.

Sometimes I think of her while I'm cooking. I have alot of time to think while cooking.  Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps.

When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing.  At times a Julia Child accent would creep in.

Ok, I still do this today.

"You'll never know everything about anything, especially something you love."  Julia Child

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I can never explain how truly torturous it is, at times, to not be able to move like I remember, and at times this stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it.

They'll listen, but then able to go about their life, hopping on their bikes, running, driving. The skies the limit for them but I'm still stuck with myself in the stillness of my body, the same before they came and I can feel my insides in deep want. 

But, it's a temporary feeling. There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability.  

Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable, most fear driven sections of ourselves.  I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want.  

That is the greatest way to learn, to be told that you can't have everything.  

Because of this, I have found that throughout the progression I pick up on new things to do.  When I find myself no longer able to do one thing, I instinctually replace it with something else.  I just want to express myself. I want to express what I can't with my body. I like cooking because there is never an end to the learning process. There is always something to improve upon and I like that challenge. If I'm not challenged, I find myself feeling very bored.

I'm not a foodie, by any means.  I mean, sure I appreciate a good meal, but Jason laughs at me because I don't really eat what I cook. For me it's not about the food as much as it is about the process and the result that the process garners - like gathering people, laughs, intimacy, comradery.

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Knowing that I am moving out of northern California, I've been receiving visitors who want to say goodbye and well, "Hello" at the same time.  A few of these have been patients that traveled to see me.  

This is Tara. I recently met her.  I believe she emailed me a few months ago and was interested in meeting another HIBM patient.

She has had HIBM for the past 20+ years, but only correctly diagnosed with HIBM a year ago. This is not uncommon. Many patients go for years without a correct diagnosis including myself. All four of her siblings also have HIBM. There are many families with children who inherited this strange HIBM gift and every time I hear of it I can't imagine what it is like for the parents to have all their children express HIBM.

Besides her siblings I believe I was the first HIBM patient she met. I invited her over and made a little pasta lunch for her and her partner, Ron. When she arrived Jason went outside to see if they needed help walking down the simultaneously short but longer than ever walk.  I was cooking in the kitchen looking out the window as she slowly proceeded under the lemon tree on a very beautiful afternoon.  

She entered the doorway along with her partner at her side. I could tell she was tired from that long walk. She took a break in the doorway and we chatted from opposite  ends of the room. I was not able to quickly walk to her and give her a midwestern hug like I would normally would do, and she was able to quickly walk to me.

One of the things with physical disability, it's hard to physically express oneself like you normally would. Sometimes I feel like I look reserved and stoic but I"m really not. HIBM does that to me in a sense. 

I immediately liked them as they came off very warm. I like warm people. With people once you get passed all the unspoken, unecessary formalities, it is the warmth that really counts.  As they rested in the door way we started setting the table with the food. 

Ron said " I bet alot of things happen around this table."  

Huh, I guess it has. I think that was one of the nicest compliments I have received.

I'm always glad to meet patients and for many I am one of the first patients they have spoken to. I remember how hard it was when I was going through the diagnosis process and being told I would never meet a patient in my life.  I'm happy to meet others because of this reason. There is no reason one should go about this all alone.

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This is Yoshi and his sweet wife Akane.  They came over for dinner a few weeks ago as well.  I made them a Korean dinner spread and we had a great time catching up. It had been awhile since I last saw them.

He was the very first Asian patient I met back in 2008. I was living in Los Angeles and he in San Francisco. He was contacted by patients with HIBM (In Japan it's called, DMRV) asking him to get into contact with me. He served as a translator while both I and Japan were in the connection process.  

Upon receiving his email we drove to San Francisco to meet him and his wife back in 2008.  He has had HIBM for 20+ years as well and still walking. His brother also has HIBM.  He is 70 + years old.

In 2007-2008 I helped build and launch ARM's new branding image and it was the beginning for me in meeting a whole world that was tirelessly working on HIBM treatment. My hometown doctors told me no no one was or would ever being working on this rare condition.  

I began working probono for ARM and that is how I met the Darvish brothers' the medical doctors who have HIBM and on so many levels has had a significant role in advancing research, interest and the treatment arena that we are slowly embarking on. He's also one of the only researchers that dedicate absolute full time to the research, unpaid at that, while other labs have other projects they work on besides HIBM.  

But besides them, there are other researchers working on HIBM treatment around the world, all approaching it in slightly different ways. It's very exciting and very interesting to perceive these separate lives involved with the same subject - HIBM.

During the launch of the new ARM image, we organized a gala and I invited some of these research scientists to join. In my naivety it seemed better for everyone to work together but as I learned more about the process I realized unfortunately it doesn't always work that way. Money and name is far more important and everyone seems to hide their work.

One of the researchers I emailed and spoke with was Dr. Nishino; a young research scientist in Japan who is also working on HIBM (DMRV).  I invited him and he politely declined, but forwarded a group of Japanese patients to me. He suggested that they contact me and form a group like we had in the United States.

And that is how I met Yoshi and ultimately traveled to Japan to meet this group back in 2008.  Yoshi contacted me and cc'd Mayu, a designer and a HIBM (DMRV) patient. She was very new to this HIBM experience.  We connected right away and I felt that she was lovely. She told me the action that was happening in Japan and I was very encouraged and proud to see so many patients that were combining and forming to make a difference in their own cause.

They had questions about fundraising and general questions about running an organization.  Fundraising for health is not common in Japan. Their way is through the government and they were actively working towards being noticed by their government, collecting signatures and trying to make a difference for the general disabled community.

After 2 months of corresponding with Mayu through email I told her I was going to visit Japan to meet them all. I bought tickets and a few weeks later Jason and I were in Japan with a long list of daily meetings. I was impressed that the patient group (PADM) were active in their own destination and wanted to meet.

Many patients travel to meet the allocated scientists working on HIBM; Israel, Japan, Texas, California, but I travel to see patients. It's good for patients to know there are others going through this rarity and above all just because you are a patient, it doesn't mean you can't make a difference. In fact, I've always thought it was the patients who could make the most difference, not only in their own treatment, but perhaps for the greater whole including disability awareness.

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It was a truly wonderful and busy visit.  The patients were friendly and amazing and forged new friendships through the brief travel.  I learned alot about their world and I tried to share mine as best as I could. I had a translator with me, and. In general there was definitely a language barrier, but even that was subjective. I think we understood each other on levels that most people don't understand even when they speak the same language.  I'll never forget them and Japan and I'm so happy that in their end of the world they are doing their best. That is all one can do.

I believe all the hard efforts will soon come forward in treatment form, and in years to come the future HIBM'ers may never have to write about their debilitating bodies in blog form. Perhaps in a distant space they will be running and walking again.

Stealth Kam

In May I drew this right after the "Bike for Kam" project was completed. She is "Stealth Kam", inspired from my Bike for Kam guys' late-night biking adventures, ravine sleeping, road-kill and moonlit guidance.  

Just to recap, Bike for Kam is a grassroots project I did with six of my friends. The goal was to expand awareness for my rare condition and raise funds.

I have been involved with ARM (Advancement of Research for Myopathies) since the day I met them and have worked on many projects and events with ARM as a volunteer, but this was the first fundraiser I've done entirely by myself for ARM.

ARM is a nonprofit organization that has been in motion for over ten years. Founded by two HIBM patients it has managed to raise awareness among the scientific and general community, provide grants to labs working on HIBM around the world and founded it's own research lab, HRG, in 2002 - where much of the biomaterials that were created there have been used in other labs and scientists. Their work has been important since HIBM is so rare that it garners little interest from these communities. 

The bike project's goal was to do a project that had zero project spending so 100% of proceeds could go straight to HIBM medical research. With that, we raised over $22,000 online AND through an entirely new community that never or barely knew about HIBM or ARM at that.

It was a fun project and my hope is to expand this grassroots chapter to the community and to patients in hopes that they will do their own fundraiser within their community.  As a small non profit, constantly challenged with resources and very very small volunteer base, I'm looking to help grow involvement.  It's the only way we can reach the end.

You can't do anything as well as you could without a team, and many working together towards a common goal is the ultimate beauty. It's easy to be at odds, it's more difficult to come together.

I remember the day the guys left the Golden Gate Bridge heading onwards to PCH. I returned home to a mess of a house from a weekend of 6 guys staying in my place as they prepared to embark on 500 miles. All the cooking and prepping for this weekend - was such a fun weekend together. I looove a messy house after people have visited and left. I like to look around among the messiness and know that people had fun there, even if I'm tired afterwards. It means my house is being lived in, and what good is a house if it's not constantly open to others?

It's funny I call this one "Stealth" because I'm anything but quiet when I move.

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Below are pictures of all the places Little Kam saw during her ride from San Francisco to Los Angeles. She's tattered, dirty and full of secrets and dreams that she collected as she rode.  I made her to travel with my friends since I could not :).

Grab the moon and stars like balloons in the sky.

Doctors. What Do They Know?

Always be open to possibilities even when they may seem more challenging or at odds to popular thinking. This is not just for medical but for everything.

A couple weeks ago I visited a new physiatrist in hopes to get a referral for my wheelchair.  I've been using a loaner one that the company kindly gave me until I get my own.  

Back in March 2011 I wrote a post It'll be Alright sharing the arrival of the next major stage of progression, a wheelchair.  

It was suggested that I go into a standing chair and use e-motion wheels, a power-assisted wheel mounted on the frame in place of manual wheels. A sensor inside the wheel registers the propelling movement and activates the electrical motors which greatly aids my weakening arms. 

The standing frame: Since, I am in a seated position more often it's important to increase circulation as much as possible. The "don't use it, lose it" phrase is one I use alot to explain the situation. While, I myself can't stop the progression there are things one can do to maintain a little though the disease eventually wins.  While these efforts and results may seem like microscopic measurements to some, it is the world to an HIBM patient.  Every second matters and if I can hang onto any physical ability just that much longer then it's worth the effort.

For anyone sitting all day is terrible, so for a patient whose body is sort of dying it's even worse.  As soon as you sit activity in the leg muscles shuts off, calorie burning drops, enzymes that break down fat drop, insulin effectiveness drops and these are just a few.  

For a patient who has limited muscle to work with it's important to keep moving as much as possible. One needs to find a personal balance of walking, standing and sitting to safely maintain what they have. As HIBM has progressed I noticed the time span in between the need to move my leg, for example, before it cramps, bloats, feels dead and falling asleep has decreased.  For example, 3 years ago, I may have started feeling these symptoms after 2 hours of not moving my leg. Today, my legs do this every 10 minutes.  

I still don't use a wheelchair in the house. It's my way of telling HIBM, "Screw you!" I shuffle and leave my wheelchair in the car to avoid temptation of retreating to the easier path.  But, outside of the house or at work I need to employ my chair almost all the time. It's just safer.

With the standing chair I can elevate in the chair by pulling the frame to a standing position. This act alone give my limbs a break.

These little things seem small but it helps to break up the monotony of sitting and relieves the body. Who knows, these types of tricks could shave off a year and allow me to maintain my mobility for that much longer.

The e-motion wheels:  My arms, shoulders, fingers and hands have gotten weaker.  With HIBM patients upper extremity weakness is very obvious.  The fingers and hands end up not moving and have a frozen look to them and the arms cannot raise. This all happens slowly and for every patient the journey, or which limb experiences weakness first, can be very different.

My weakness began in lower extremities; hips, legs, feet, toes, etc., and now it has moved upwards to my neck, arms, shoulders, wrists, fingers and hands. This weakness is not quite as visually recognizeable compared to others, though I absolutely feel it. It's obvious when I can't open a bottle, lift a dish, grab small objects, etc., but my fingers haven't visually "froze" yet.

With that, though I am ready for a wheelchair I am not ready for a powered chair.  I could go directly to a powered wheelchair but I'm avoiding it. Just like 7 years ago when I avoided a wheelchair after my doctor tried to put me in one.  

Though, I can propel a manual chair slightly on flat ground, for the most part I don't have the shoulder strength to propel one alone. But, with these sensor assisted wheels it helps me to maintain independence by completing my rotations for me.  I push and it pushes the complete cycle for me making it easy for me to tackle any evil terrain, including carpet.  

Yes, carpet is evil. I've often day dreamed about carpet as it innocently lays there while I try to trek across it. In my mind it suddenly billows up as this evil carpet monster looming over me as it mocks me.  

So, there I gave some background of these contraptions that will significantly help me gain independence. I look for these tactics of holding onto what I can because I want to be able to function and not depend on others. At least for another day.

I walked into the physiatrist's office hoping he would be on board. I haven't really gone to a doctor in quite some time because really there isn't much they can do for me when it concerns HIBM.  Walking, or excuse me, rolling into his office brought back some eery memories but I did my best to ignore them. 

I talked to the doctor, and like all doctors I've ever met, he never heard of my condition nor could he comprehend. I could tell he's the doctor that is used to a very typical protocol.

A meets B, so I give them C. Very formulaic type of treatment. Only problem is people are not formulas.

He listened to my spiel explaining the nuances and needs and afterwards he was condescending and pandering looming his doctor badge over me.

Now, we all know it is a bear dealing with insurance companies. The trick is you need a good doctor that is willing to fight for you. There are two different types of people, those who stick with status quo "it's never been done" attitude, and those who like to break the mold and give it a try anyways. This guy was status quo.  

I was already aware that a doctor would have to send these DME (durable medical equipment) requests in several times because they will almost definitely be turned down the first time by private insurance, if not the second.  But, he didn't even want to try. He wanted me to go into a powered chair. He told me that me "sort of" propelling my own chair would not do anything for me and not save anything.  I disagreed, my way required utilizing more energy than twitching a little stick on a powered chair.

As he spoke it conjured up past memories, memories that I'm not sure I've really dealt with. The journey of finding a diagnosis.

I should probably one day document it here. I know I am not an isolated case. So many people go through this and obviously not just for my condition.

This post is not intended to pick on doctors. I am speaking of my specific journey. I've come across many doctors and prior to my move to California they were mostly all bad with terrible stories attached to them.  

For example, my physiatrist from seven years ago telling me that I needed to go into a wheelchair right away and quit college. HIBM hadn't even taken over my body fully, I was functioning and yet he read the prognosis of my alleged, at the time, diagnosis and requested me to go into a chair.  It was a good thing I refused to do anything of the like. I left his care immediately.

Another past doctor stands out in my head very clearly. A high powered, well-known leading doctor at Detroit Medical Center of Michigan.  He was very clean cut, white jacket and always at golf outings for "business" affairs.  He would treat me like a little girl, something I severely hated.  I kind of have that innocent, young kid look and I notice people automatically assume my capability levels upon meeting me. But, I'm anything but that impression. I was on a mission with no time to mess around.

They did a muscle biopsy on my leg and in the same area that a previous hospital had done it at that.  

I said, "Hmmm, I'm no doctor but would it be better to do it in a different area, or even on a limb that wasn't as progressed, like my arms?"  

They did it on my leg anyways because what do  know. 

Typically a biopsy result should be in your hands in a couple weeks. Detroit Medical Center took seven months. Seven months of me constantly going into his office only to hear they didn't have an answer yet as he ushered me out the door, patted my head and handed me a lollipop.  At the time I was in design college, a heavy heavy major in automotive design. I barely had time to sleep let alone go on these medical ventures, but he didn't mind wasting my time.  

My last visit consisted of me in his office hoping that he wouldn't be a douche again.

The last visit he came in, "I'm sorry, we will have to schedule another time, I still don't have the results."  

I started to cry. Part, because I was so sleep deprived from school and part, because this was a ridiculous situation.

He grabbed my arm and said, "Awwww, is it because you're parents are getting a divorce?"

I said, "No, it's because you're an asshole. First, why not tell me you don't have it instead of having me trek in here for an appointment. Do you know how hard it is for me to physically get here? Second, it's been seven months for something that should have taken 2 weeks".

I left his office ready to move onto another doctor.  They later called me with a concluded "diagnosis".  I found out they lost the sample and were hiding the fact.  Even later, I found out, from the Mayo Clinic, that the sample was so deteriorated that Detroit Medical Center could not have reached an accurate pathology diagnosis, which means they sort of made up a diagnosis.  Mayo Clinic also was confused why they would do the biopsy on a deteriorated limb.

Yes, I thought the same.

The stories could go on and for most all of them I was alone in my search.  I never had time to accept a diagnosis or cope with it because I was too busy on a search. When a doctor didn't tell me what I wanted to hear or I could tell they were full of it, I left and moved on. As I got good and experienced I became good at identifying bull shit and would get out as soon as possible.

So, a few weeks ago as I sat in this San Francisco Bay office listening to his condescending manner I felt like I was reliving it again, except this time I was more educated about what I had. I tried to hold back tears and in my mind debated on whether or not I should let him finish his "care" or just walk out.  

I tuned out just waiting for him to finish so I could go off and find someone that would listen and help. He wanted to put me into a powered chair and I was crying inside.  

"Didn't you just hear what I said?" I thought. "It's important not to give in too early.  Why would you want to debilitate me quicker than I need to. In the long run I'm doing more disservice to the system because I'll just be another body for the state to take care of.  Don't you get it? I'm trying to avoid this it's actually saving healthcare money." I thought.

As he finished, I nodded and left as quickly as I came. He didn't even want to try.  It brought back so many memories, the lonely times in the cold doctor offices, the time I went to Mayo Clinic on a 4 day diagnosis excursion alone and at night would cry alone in my hotel room while Golden Girls played in the background. It sometimes comes rushing back and when I can't control the inner tears, it's all obvious that those times affected me more than I realized.  

The difference this time was someone was with me. Jason.  

That day I had another doctor appointment on the other side of the clinic and as we waited I bursted out crying. Leaning forward in my silly wheelchair I put my face into my hands and cried.  "I don't want to go into a powered chair".  

I hate people who love the word "can't" and I've found alot of people do.

Doctors, what do they know?  They're groomed, knowledgeable in their craft, but it doesn't mean they know everything.  You can't measure heart.  You're instincts are good, follow them and don't take ONE answer as THE answer.  All the doctors that told me I was too rare for anyone to ever care about developing treatment for or that I would never meet a patient like myself were all terribly wrong.

Keep pushing in an educated and balanced manner.  Know your stuff and always be open to possibilities even when they may seem more challenging or at odds to what others think.  This is not just for medical but for everything.

Anything

I'd give anything to be able to run. Anything.

Route 1

Doing some touring and exploring the California coast between San Francisco and LA, and meeting really interesting characters along the way.

I'm bleeding from cuts and bruises from getting on top of this rock, but the view was worth it.  I look like I am sitting so effortlessly, but getting me up here, and even just sitting without falling, was a huge ordeal.

Passerbys were confused and then they would smile once they saw what was up. Perhaps they thought I was drunk, when really it was my silly legs and the like that don't cooperate.  104 degrees and loving it, my body feels so much better in the heat.

The coast is inspiring and I haven't felt inspired in awhile so it comes at a great time. 

Happy 4th! I hope you're doing something crazy, wild or exploratory, and most of all feeling a little inspired today.  I can't go anywhere without it.

A Friend of Mine

3am seems to be a friend of mine. It knows all my secrets.