Rube Gold·berg (ro̵̅o̅b′ gōld′bərg) n. a comically involved, complicated invention, laboriously contrived to perform a simple operation.
Rheumatoid Arthritis Guy flew must have passed through a space-time continuum this past weekend, because he now finds himself in a new universe. In this world, the goal is no longer to squeeze three tasks into one, shave a few seconds of accomplishing an activity, and then use these efficiency savings to squeeze even more work into the day. (Sounds like a silly way to do things when you think of it this way, no?)
I just got back from my consultation with a physical therapist. We have an action plan with three priorities: 1. hands/wrists, 2.feet/ankles, and 3.knees. The work starts tomorrow. I’ve been asked to purchase more superhero gear – some gloves to sleep with, some padded gloves to use when I am walking with my crutches, and some different types of wrist wraps. (Wonder Woman move over, Rheumatoid Arthritis Guy is going to give you some fierce competition in the costume category!)
I continue to find that completing tasks is no longer a matter of going from Point A to Point B, as was the norm for me up until couple of weeks ago. Out of nowhere a bunch of other points, all out of order, have appeared in between. Something as simple as opening a bag of potato chips requires me to locate my cane or crutches (I think I need to start implementing the Dutch bicycle model where I have multiple canes and crutches throughout the house!), and then I have to find a pair of scissors, and then I have to cut the bag open, and then I have to get a bowl, and so forth. And condiment packets – don’t even get me started…those things should be banned. (For those lucky enough to be by an In-N-Out Burger, it’s the best – you can pump your ketchup into little paper cups.)
So yesterday I started thinking that if I was going to have to complicate what used to be simple, I might as well have fun with it. The image of Rube Goldberg contraptions entered my mind, and I knew exactly what I now needed to do. (When I was in middle school I used to check out this book repeatedly, I was so in love with the contraptions that required twenty steps to dry an umbrella. A few years ago I bought a copy of the book to have at home, this morning it came off my bookshelf and onto my nightstand.)
On a little side note – I was also a big fan of the Mousetrap board game. I think that was on the top of my wishlist for my tenth birthday (I am just a few years ahead of the video game generation). I remember taking it home with such excitement, as the commercial which showed the Rube Goldberg contraption of bathtub, diver, gears, marble run, and mousetrap was so cool. So what I want to know – is there anyone out there who was ever able to make the hope contraption work from start to finish??? The pieces were made of such flimsy plastic that my game could barely stand up much less perform as expected.
Okay, rant’s over…back to my main point.
I don’t know how long I will be living in this Rube Goldberg world, but I think it can be a pretty fun thing to explore from now moving forward.
When I left the dining table after lunch, I passed a mirror and saw that when I shaved this morning, I missed two large patches on my upper lip – making me look like an infamous German individual from history. It looks like all I need now is to come up with my own Rube Goldberg contraption to ensure I am properly shaved in the morning. Any suggestions?
I think I might go watch some Wallace & Gromit right now and get my mind off my rheumatoid arthritis. If you have any personal stories on complicated way of completing simple tasks, please do share!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Universal design is the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. –Ron Mace
Ten years ago to the month, Rheumatoid Arthritis Guy was putting the final touches on his graduate thesis project. At the time I had no idea that my destiny was to become a superhero in the near future. The funny thing: even at that time – ten years ago – I was already designing with superheroes in mind.
The Americans with Disabilities Act was still relatively new in the world of architecture. In many of the articles I read on the topic, I sensed an attitude of annoyance. This is yet one more checklist we have to go through. And don’t even thing of making any renovations to a building, as you’ll be obligated to comply with all of the aspects of the new law. And restaurants – how are they going to survive by reducing the number of tables in order to make the space more accessible? (Serve better food at a more reasonable price, maybe?)
I thought the idea of designing for people with disabilities was a beautiful thing. I started doing more research on the subject as the time to finalize my thesis topic approached, and stumbled upon the world of Universal Design. What a great concept! Let’s design product and environments for all types of people – people with disabilities, people of different ages, and people of different cultures. (In the world of mass production that we live in, it’s easy to believe that there is such a thing as a “typical” person that comes in three sizes, no?)
As I was in architecture graduate school, the main part of my thesis manifested itself in a design project which was preceded by a semester of writing. I decided that I was going to design a “Museum of Prosthetic Devices”. I had two goals.
The first was to make a wheelchair-accessible ramp the primary form of vertical circulation through the building. I was already tired of the practice of slapping on a ramp in the least desirable corner in order to comply with the new accessibility requirements. (I used to call these “Lee Press-On Ramps”.)
My second goal was to show the beauty of all types of assistive devices, from the antique to the modern. My research led me to the library in the medical campus across town, where I found catalogs of all types of prosthetic devices, wheelchairs and mobility aids, visual aids, and hearing aids. To me, these items were true objects of art and deserved to receive recognition beyond their utilitarian medical purpose – I even kept a prosthetic leg at my drafting table for motivation. (During my final review, I was told that my entire thesis dripped with irony, as I was trying to put the spotlight on items that should remain invisible. Can you believe that?)
My career in the past decade has spanned many different areas of design practice. I continue to see some of the same thinking, that designing for accessibility is something to added at the last minute in order to be able to check off the corresponding boxes. I will continue with the principle that accessible design should be the starting point in all fields, from software design to product design to urban and building design.
There is a fine, fine line between losing hope and moving forward. Yesterday Rheumatoid Arthritis Guy crossed that line multiple times, and it was scary as hell. My biggest victory during the afternoon was lifting my own fork to feed myself – before yesterday I would have never been able to envision that such a seemingly simple task could be so difficult. I now know otherwise. (I did ask for help in cutting my food as it’s been weeks that this has become increasingly more difficult. I always know my place setting – it’s the one with a steak knife, no matter what is being served.)
But today is a new day.
I spent last night and this morning reaching out to my personal support network, both near and far. This was a big jump for me, as I begin to finally accept that asking for support is not a sign of weakness, but is indeed a sign of strength. I know I still have a lot to process on the path of asking for help, but being able to write the previous sentence with ease is a big step forward for me. (And I really do need these big steps, as my physical steps have become shorter and slower.)
Sometimes the support we are looking for comes from the individuals we expect it from the most. Sometimes is does not comes from the individuals we expect it from the most. At other times, it surprises us and comes from places where we least expect it.
Some of the strongest shows of support that I have received during the past few days have come from my readers, from fellow superheroes in online support groups, and even from the manager at my fitness club who told me that I would not be charged for any days that I lost at the gym due to limitations of my rheumatoid arthritis. For this, I am grateful.
Some of the strongest shows of support that I have received during the past few days have come from loved ones close in my life. It is hard to see the effect that my illness has on them, but I am learning that by working together we can all become stronger. I am working past feeling that I am burdening them, and learning that in talking and crying we can together move forward. For this, I am grateful.
I close today’s post with sincerity instead of humor. To everyone near and far, personal and virtual, – THANK YOU for your support. That is just what I need to get me through moments like this.
[Looking forward: I am going to my rheumatologist this afternoon for some anti-inflammatory injections. I am also lining up a physical therapist familiar with RA to exercise my body during some of the most difficult periods.]
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
For a long time it seemed to me that life was about to begin…But there was always some obstacle in the way, something to be gotten though first, some unfinished business, time to still be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life. -Alfred D. Souza
Yesterday was a difficult day. The constant inflammation in Rheumatoid Arthritis Guy’s hands and feet has led not only to a great reduction in the amount of weight they can support, but is also limiting their range of motion. Waking up yesterday with such limited mobility felt like crashing into a brick wall. Crash test dummy or not, I made it my goal to at least move from room to room throughout the day. Although it was difficult, I managed to pull it off. (Never before have an Ultra-Portable PC and a MacBook Air – weighing in at 5lbs and 3lbs respectively – seemed so heavy!)
How is it that just a couple of weeks ago I was starting my day with not too many difficulties, I was going to pilates/yoga class five days a week, and I was able to step out of the house on short notice and go run errands – when now, just being able to bathe myself and get dressed sometimes feel like the biggest victories of my day?
So I got to thinking, what exactly is victory? (Is it me or am I beginning to sound like Carrie Bradshaw?) Victory always seems so big. Big “V” posters. Sports championships. Victory is more than just winning – it’s winning big. The confusion in my mind was growing stronger: is it okay to feel victorious after just getting out of bed, after just taking a bath, and after just getting dressed?
I woke up this morning, still reeling from the rapid descent of the past couple of days, and with my left foot in an even worse state than it was yesterday. The thought of going through the day seemed too much to handle. My mind and body were sending me signals of defeat (the thought of curling up and spending the day in bed crossed my mind more than once). I was just on the verge of throwing in the towel when I thought about the question that has been on my mind for days, and decided – yes, it is okay to redefine victory. (I ohhh so much want to make a George Bush jab here – but I think it’s best for me to keep politics out of this.)
So I spent this Saturday redefining victory.
Deciding I would leave the house during the day to go see the new weekend blockbuster movie. Victory. (Even though I had not yet done anything physically, I already felt that just having made this choice was going to be one of my biggest victories of the day.)
Bathing, dressing, putting on all of my braces and supports, and switching my cane for my forearm crutches – I’m upgrading my superhero gear so rapidly, it seems. Victory. (Even though this took over and hour and left me feeling exhausted.)
Allowing myself to lay down and listen to music for fifteen minutes before stepping out of the house. Victory. (In addition to being able to recover from getting ready, I was able to mentally prepare myself for the challenges I was soon going to face by going downtown while using crutches.)
Going to the movies and watching X-Men Origins: Wolverine. Victory. (Okay, the movie wasn’t that good, but with the sound literally piercing through my bones – must it be so loud? – it did give me an opportunity to get my mind off my rheumatoid arthritis. I would never rag on another superhero, but have you ever noticed how Hollywood superheros struggle when they gain new abilities. What’s up with that?)
Making an unexpected visit to a nearby museum where I spent an hour looking at some paintings and sculptures – one of my favorite things to do but probably one of the last things I would have proactively planned on a day like today. Victory. (Going up and down the antique wooden steps with my crutches -as there was no elevator – doubled as my exercise for the day.)
Taking things one hour at a time today ended up turning what would have surely been my worst day in months into one of my best day in months. If, in the future I have to take things one minute at a time to get though the day, that is what I will do. The pain is still there, the mobility problems are still there, but somehow I am learning that I can continue to live a fulfilling life.
So in closing, I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Kudos to my sister for recommending “Learning to Breathe: One Woman’s Journey of Spirit and Survival“. I downloaded the book this morning and got through the first 100 pages. Reading about the author’s personal struggle with pain and hearing her motivational message was definitely key in turning my day around.