Here is a video of me demoing the new wheelchair. The little boy you see at the end is Niels. I had to add his wheels into the video, too. He's the 3 year old son of one of the ARM founders and my sleeping buddy when I stay in LA.

I recently went back to LA for a few reasons like, getting fitted for my very first serious wheelchair, series of doctor appointments, ARM related biz and recording of a little bike project video with my friends.  That was two weeks ago. I wish I was better at uploading right away - mostly because the feelings and experiences would still be fresh and easier to convey all the intimate details and emotions of the moment. But alas, I am not always great with this.

I mean, I haven't wrote about my trip to Korea and Thailand yet and that was from September of 2010. I'll do that soon.  

Anyways, each day I did try and write what notes I could in my iphone notepad.  Apologies in advance for this very long and mis-shapened post. Not exactly poetic, but there is alot of information to cover here.

Wheeling and Dealing

Some friends in LA set up appointments for me to finally try out a more serious wheelchair.  My walking is becoming quite parse and there is nothing left to do but look into further assistance. I feel like I did what I could and held out as much as I could.  Had I not held out as long as I had, I could be in worst condition today.

Still, I cannot hide how I truly feel and there was some sadness for sure.  I have said it a number of times here, but the thought of the wheelchair is not what makes me sad.  I am not so concerned about how people will view me or look down on me because I am in a chair, but moreso I hate the reminder that the next stage of weakness is around the corner.  I hate the increased heaviness of my body.  I am dead weight.

I hate the increased weakness and loss of such simple movement. If I could go into a wheelchair and keep my arms and hands I would be so thankful. I can handle having wheels as legs, but not sure I can handle losing my arm. and the like. I suspect if, and when, this happens I will adjust and design this limitation into my every day life.  

My friend, founder of ARM and HIBM patient himself, suggested I do not go into a powered chair quite yet.  Doing this will cause my body to get weaker at a faster rate, because I will use less of my body to get myself around which results in faster atrophy.  So, a way for me to maintain what I have just a little longer is to go into a manual chair.  However, due to the increased spreading of the disease into my arms, shoulders, hands and fingers - being able to propel a push chair is virtually out of the question. I can push it slightly, but any inclines or carpet gets in the way of any movement beyond that.

So, I was set up with e-motions wheels and a standing frame.  The e-motion power-assisted wheel is mounted on the wheelchair in place of the manual wheels. The batteries are integrated in the wheel hub and can be removed from a sitting position. A sensor registers the propelling movement and activates the electrical motors.  I think the function basically derives from a bunch of magnets constantly fighting with each other. Pushing and pulling.  Using these will allow me to propel a manual chair independently, and still get some arm exercise while not damaging my arm muscle fibers. If I do too much, muscles tear and unable to repair themselves once it happens.

The frame is Helium's Lifestand wheelchair.  My friend wanted me to try a standing chair so that I have some independence, but mostly so that I am not in a constant sitting mode.  If I switch from walking to suddenly sitting 24/7 that will just make what I do have left in my legs weaken very quickly. The Lifestand chair is a manual standing frame and allows me to stand if I need to reach something, but more importantly give my legs some circulation and maintenance of some strength.

When standing I have to use my quadriceps to maintain position, so it helps work out my quadriceps a bit.  It seems trivial, but ANYTHING I can preserve is huge measurements when it comes to progressive conditions. Helium is the lightest standing wheelchair in the world and uses the same materials that are used motor racing and aeronautics.

So, here is the moment of truth -- I pretty much picked this chair because of the design.  Not that it is such an amazing design, but in the DME (Durable Medical Equipment) world it is definitely better than most. Some of the other standing chairs I saw were horrendous and I felt like I was being locked in some contraption that was going to eat me. But, I liked the lightness of this one and I liked that the design is form following function.

The swinging function of the chair is conveyed through the design of the curvy frame and hand rails.  In other words, it looks like what it does.  I loved that they called out just the frame with a color.  The world of wheelchairs and mobility is attempting to make strides in design and looks, but still very much oriented in function with bare minimum design. The industry is way behind and has so much potential.  

As my condition was worsening during design college I remember taking notice in wheelchairs, and the like, and thought it was such a shame because there was so much potential.  For someone that has to live the rest of their lives in a chair, why can't the design be a little more inspiring?  Why does it have to be bare minimum functional design?  I was talking to the providers of this chair and as a designer I shared my perspective on the subject. They said though it is making strides most people in the field wouldn't understand what I was saying.  At times when they speak with the european company about changes, color or other features, they can't understand why the look of something makes any difference. Which is really telling about the medical equipment industry.  The industry sees it as a contraption that is needed and not desired, so why put any effort in designing it?  

Picking out this more stylish stand made it that much easier to transition from walking to being a chair user.  

It sounds shallow, but it's not. Design is important, not just for function, but for those who are being placed in a life altering situation.  Design has the potential to not only solve problems, but make monumental life changes that much easier.  For me and the like a wheelchair will become a part of my skin. It is not unlike clothes and how we desire to express ourself.  If wheelchairs were viewed more as a device of expression, then perhaps they would be handled and designed differently.  The team that set me up in this chair was wonderful.  They came over to where I was staying and stayed late making adjustments while I tested it.  They even borrowed me the frame and wheels while I was in LA so I could test it out.  

"Tried a wheelchair today. While I am glad such things exist to assist me through the progression it was a big milestone and I couldn't help but get teary..."

I definitely felt more independent while testing it out and I did feel a sense of relief to have such equipment available to me in my time of need so I was happy, but at times I had to turn my face away from everyone because tears would well up. I can't help it.  I don't feel like my life is over or that I am any less of a person, but these days I am not the best at hiding how it really feels deep down.  It is still hard.  It is still very tough.  My mind is like a self running projector showing me images of my past years and how it has all progressed--where I was then and where I am now. Recounting when I was walking with more ease or mentally zooming in on my feet as they climb a curb.  How did I do that?  It feels so long ago, yet like yesterday, and at times I just don't know how I got to this point.  What happened to my body?  

After that we ordered some chinese take-out and had a great heart to heart conversation about DME industry, insurances and the types of scenarios and people they experience.  It was very insightful since designing such things is something I want to do in the future.  They were great people and went out of their way to take care alot of the wheelchair fitting process in a short amount of time.  I'm not in the clear quite yet. Now, begins the fighting back and forth with insurance to see what they will cover, that will be epic.

Doctor visits

In addition to the wheelchair I had numerous doctor visits. Cardiologists, pulmonary, blood tests, MRI's, etc. The past few years I've barely seen a doctor. As a matter of fact, after I received my final diagnosis of HIBM from the Mayo clinic I never really went back to a doctor again. After all there was nothing a doctor could do for my condition and after years of dealing with insensitive doctors I needed a break.  

However, and if you are an HIBM patient you should do this, it is a good idea to get these regular check ups once a year. You need to have a chart, because when trials do happen you need a baseline. After the trial/treatment they can start documenting if you are improving or not. Make sure to keep a yearly chart on yourself.  Test your creatine levels, too.

Friends and love.

Most of the trip Jason was not with me due to work.  He flew in Saturday and we drive back to San Fran together.  When Jason is not around it always takes time to adjust to another person.  Everyone helps in different ways and even though my friend Sandra, her husband is an HIBM patient, he requires lifting in a different way than I do.  In short, we all have our own styles and comfort levels. My friend, Sandra and wife of the ARM founder, flew up to SF and drove me to LA and I stayed with them during my time in LA. They are wonderful and obviously understand the needs of an HIBM patient. Each time I visit and stay there I notice I need much more help.  Last summer I visited and I could go to the bathroom by myself, but this time Sandra had to help me each time so now she had two HIBM patients to take care of.  Two patients to lift, two to take to the bathroom, two to help shower and get dressed. She is wonder woman.  

She says she doesn't mind, because that is what you do when you love someone. Very recently, I also stopped driving  so she had to drive me to each of my doctor appointments.

I slept in their son's, Niels, room. Night time always seems to be the hardest because I am alone in the bed as well as it being the time of the day where everything that happened kind of comes down all at once.  

At night I need help turning in bed. Last time I was at Sandra's I could turn myself, but this time it was a little tougher.  If I get myself into a position I can't get out and I am stuck for the night.  She has to move Bobby, her husband, all night. He needs help to move his legs and his arms and I am getting to this point, too.  

I remember crying in the middle of the night and not knowing it. Most of the time I tried to move myself because I didn't want to wake Sandra up in the middle of the night, but at one point it was so painful that I called her.  I was half asleep.

Our way of communicating is actually to whistle. My whistle was a very low one, but oddly she heard it and came right in. Half asleep I cried, "How could you hear that?" and told her how much it hurt from not moving all night. She moved my legs to a new position. My legs were deeply asleep, stiff and frozen cold from no circulation.

See, most of us can move our bodies while we are sleeping.  Our body is working even though we are not, so we move throughout the night without waking up.  However, I cannot do this.  I literally have to wake up to even think about moving and normally need someone to move me to a relieving position.

At the end of a busy day of appointments I fell into bed extremely tired, both physically and emotionally. I'd pull the covers over my head and cry as to not wake up their son. But, more than anything I was thankful to have such great friends. The thing with friends is that very few are really there for you and for some this even goes for family.  So, when I find people that love me and go out of their way for me I am deeply indebted.  

I wrote this one night on my iphone:

"They are more than friends and even more than family at times. Sometimes you experience love so great that there are no words.  At the most humbling, saddest, darkest moments seeing a pair of hands come to help you is what gets you through.  You can say you love someone and that you care, but it is the actions that always shine through. Love is selfless acts in action. Love is taking on accountability, responsibility even when you don't want to and even when it "inconveniences" your life.  I cried tonight. So much I could not only taste my tears but I could smell them, too.

So many emotions and I don't think I have the words to explain what it feels like.  Not to self-pity, but it's hard no matter how you shake it. Not so much sadness or depression - rather the seeing of the road ahead.  It's also feelings of gratitude, love, physical tiredness and all the things in between. You think you know what love is and then you see it again for real.  The people who are there in the most difficult time in your life, even when it is not easy for them to see it all happen. I wish I could describe it. I wish there was a camera on my shoulder and in my heart, so I could document all the little events, feelings and observations that create a whole picture. I wish I could better explain it.  I wish you could see it and feel it.  

When you experience love it only renews you and encourages you to keep pushing even when it feels like no one is listening, especially when no one is listening.   It encourages you to love others and give of yourself to others despite it putting you in the most vulnerable of positions.  The position of rejection, or unrequited love.  The way they have helped me and saved me could never really be communicated nor measured.  Not everyone has the opportunity to experience such love housed in the least of desirable moments.  I feel blessed for that and if I could encourage others to love like that...just know that it does matter...to someone like me in those fleeting most darkest of moments.  

Out of the corner of my eye I see all the things that Bobby and Danny can't do (HIBM patients & founders of ARM), and while I don't think any less of them because they can't I see myself in them.  And while I respect them so much, if I can help it I don't want to be at their stage and they feel the same way for me, too. I need to keep fighting because the technology and research exists where possibly I, and others, don't have to be wheelchair bound.  It is getting there that is the hard part.  It is easier to take the paths of more assistance because it really does make life easier.  I mean, who wants to struggle walking 60 steps to the car when you could just roll there? It is a slippery slope and I have to do my best to have balance between knowing when I can't do it and knowing if I just push myself--I can.

I am going to make an assumption and say it was hard for Bobby and Daniel to see me at this stage of a wheelchair.  Knowing my legs are dying and that my arms are next.  He said I am a representation of the people they are trying to help and why they started ARM 10 years ago.  I personally know they take it to heart when they see other patients progressing.  It weighs on them heavily and time is of the essence...Alas, this is what the research world is like.  Not everything happens quickly or the way we want it. For him, he says, it is too late and he is already in a wheelchair, but for me I am an example of what they are working for and was supposed to save from getting to their point. Perhaps I was not meant to be the patient that research will prevent from getting worse or being permanently wheelchair bound, and if this is so I at least hope someone else can be saved.  I don't say "saved" to demean those that are in wheelchairs because obviously I don't see them as "less than", but it is a tough jorney and if it can be prevented, then why not?"

Bike Video project and friends

Lastly, a fellow CCS designer alum volunteered to film a short video explaining the purpose of the 500 mile bike project that we (Andres, Viet and co.) are doing in the spring. I had never met Steve, but wonderful of him to volunteer his time like that.  Filming and editing is alot of work and takes alot of time so I am overwhelmingly appreciative.

We started filming my friends and I just casually talking at the kitchen table.  Sun was out and it was a great day.  We then took the camera to a little bike trail at the beach and I was able to join in the biking :).  I wheeled along side them in my wheelchair and it was pretty cool how far I could roll.  This was probably the most active my friends had ever seen me. Filming pretty much took the whole day and it was alot of fun.

Because feelings about a disability don't naturally come up, or people are afraid to ask, I am sure they learned alot from me as I was explaining the gamut of how it came to be and how I felt about it, and I too learned alot from them.  Guys in particular are not exactly forth right with their emotions, but as they spoke to the camera I learned how they view it, how they view me as a friend, how they wished it wasn't so...etc...and it was a wonderful moment. You will see our day compiled into a short video soon. I will post it.  I don't think "we" share enough about how we feel about each other, but time is not around for forever, so don't forget to tell those around how much you care about them. This is very important.  And remember, it'll be alright.

Thanks for reading my blog :)