My journey through disability

NikonsandVstroms · June 23, 2009

I started this as a thread over on the sister site ADVrider but with the end of college it quickly got put on the back burner and I'm posting it here because even though the beginning is about motorcycles it really turns into photography, and how these two forums helped me get through the trials and tribulations. Hopefully with this all have more motivation to continue the story especially since the following sections are very heavy in photos:

Also this is all being written with speech recognition so there are some random words

My story is all about what seemed like a simple sinus infection, it would leave me in bed for a week at a time but nothing life threatening, and the docs kept calling it a cold so it three or four months and me telling them that it's not going away to decide it was a sinus infection and start antibiotics, 1st one did not work, then they moved to Cipro which seemed to work after a 10 day course....a few days later I was in the ER and another 14 day course.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
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After that second course of Cipro the problems started. I had multiple emergency room visits for my jaw not being able to open, my hands not working, and inability to walk. Each time the doctors would say they don't know what's going on, and write me a script for 20 Vicodin.
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Eventually they sent me to rheumatologist which is where my six month long diagnostic marathon started. I had a bunch of seemingly random conditions that all started at the same time so something was up. I was in the hospital two to three times a week either to try new treatments or for diagnostic tests. The one good thing I can say is other than this current condition I am perfectly healthy. I've had well over a hundred blood tests, multiple MRIs bone scans x-rays EMGs (which actually are torture, the shock your nerves and even stick and needle into your hand which hurt like hell) I was handed off to neurologists who eventually figured out it was Cipro that caused it. And then they eventually put me on 16 pills a day so I could function at all. And some of those pills have really nasty mental side effects much like those suffered by dramatic brain injury patients in limiting higher mental function, and short-term memory. (My uncle suffered 2 TBI’s and was an engineer, he told me about very similar symptoms when he tried to work out complex problems)
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But the point of this thread is more about how I've tried to cope with the disability which so far has cost me the ability to work, ride motorcycles, and even a 2 1/2 year relationship. Now that I'm finishing up my degree (more on the troubles going through college with this condition later) my mind is finally freeing up a little bit to get the story out about how important it is to have things to keep you going.

At the very worst times, I was on a diet of pure soup, walking was extremely painful and going the 10 feet from the bedroom to the bathroom would be an arduous task. A diagnosis was still months away for me and I had it in my head that I would be good to go by summer, so a lot of my mental effort wasn't a planning a trip on my V-Strom to <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:State w:st="on"><st1:place w:st="on">Alaska</st1:place></st1:State> to celebrate being able to use my hands again.
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This gave me a goal in something to occupy my mind for the huge amount of time I had nothing to do when not in class (which I got to from rides by my girl and mother) and on days I could walk a little bit further there was a motorcycle dealership that are used to work at just a block down the road. Just being around the bikes would brighten my day. And I also got many encouraging words from the people I knew were there.
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The other thing that was a great help was for school work I got speech recognition software which made it possible for me use the computer again is what I'm currently using to write this,. Trying to navigate ADVrider without a mouse was a very interesting experience. But luckily soon after I got an optical mouse which uses an infrared camera and a target on my microphone to position the cursor and then I would just use the vocal command mouse click. The crazy thing though is I have a Dell graphics workstation because previously Web/graphic design and it is just fast enough to surf the Internet using this setup. I tried installing on a bus or computer and would have a two or three second lag from what I gave the command to one it would be acted on.
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Surfing this forum gave me a lot of practice, making me much more proficient with the speech recognition/optical mouse combo to the point that I could actually surf somewhat normally even if I'm saying mouse click or scroll down every 20 or 30 seconds. And reading all the ride reports, and of course all the fun in Jomama kept my mind busy/entertained in this very horrible situation.
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Girl this time was unable to hold any sort of camera and by my screen name you can tell that's pretty bad. But around April or May I found a really small Nikon (S600) which I can use and that led to the other main thing that kept me going photography.
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Soon after I got the camera I was asked to provide some new images for a show going up in <st1:City w:st="on"><st1:place w:st="on">Lowell</st1:place></st1:City> and took my first real pictures since becoming disabled with this being the one that went on display:

The rest of the start will be accompanied by photos, basically after this point I always had a camera with me, and the photos themselves reflect a lot of my feelings during any of those periods.

NikonsandVstroms · June 23, 2009

After the semester in the summer came at a need to go to the hospital as much, since they were running out of tests but I did get a colonoscopy and out of it which is something a 22 year old at the time should never had to go through! (No pics on that one)

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But I do have one from early on in my rides into the hospital since <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:Street w:st="on"><st1:address w:st="on">Harvard Square</st1:address></st1:Street> was where the bus ended up:

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A lot of the time was spent in my apartment, so I continued to pass the time through ADV, lots of ESPN as well as the news since it was 2008 and you could expect nonstop political coverage, and hearing about every sneeze Obama or McCain would have. My girl at the time left early for her job since the commute was up to the North Shore in the days would basically be me surfing the Internet with my setup, Mike and Mike in the morning, ESPN first take, then surfing the news channels or Anthony Bourdain marathon which travel Channel seem to do a lot. Not to mention the ingenious ways I had to come up with to eat and drink. Basically any plate had to be light and rested on my forearm so my wrists did not bear the weight and pour glasses of water half full and still using two hands. This is a lot of life so I am missing huge chunks. One that I remembering is that during the semester I had to always ask people to open bottles of water for me, and actually needing to do that form technique even with just a grilled cheese sandwich. And then any doors that I had to open I would stress out my hands hurting them to get it to crack open then put my foot in to use my leg to open it fully.
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Back to the summer time I really took notice of what was around me and my photography move towards that for a bit. This is when I give the image starting off my first post as well as these:

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The next big discovery for me was the sister site for this one Dgrin’s photo challenges which gave me motivation and purpose during the summer. For the first one of these I was given a ticket for a Red Sox day game which is a great break from the daily monotony. So I did a lot of personal documentation of the day, here are a few:

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With this being the image entered into the contest:

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And this is so far is still at the very beginning of the summer

Allan FG · June 24, 2009

Your photos are excellent, I'm sorry to hear about your condition. I'm very interested in the rest of the story.

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Qarik · June 25, 2009

please continue!

KvPhoto · June 26, 2009

Love your photos, please tell the rest of your story when you can!

dsm02c · June 29, 2009

Great work man. Sorry to hear about your situation I know it's hard. I broke my leg recently and I can relate with the frustration and well you are in a much more difficult situation than I am but it seems like you have a great handle on it and really making progress. Keep up the hard work and keep shooting!

Awais Yaqub · June 30, 2009

Oh Sorry to hear about your condition, may God bless you with health. Your images are truly amazing

NikonsandVstroms · July 1, 2009

The rest of the summer wasn't that different, still going into the doctors for more tests, but not as frequently and a lot of time in the apartment. One of the things astir doing is just going on more little journeys from Boston since the bus stopped right in front of my apartment it was easy to get around. Beyond his little ventures around Boston I also would occasionally go off on the commuter rail to either visit my girlfriend up on the North Shore where she was working or down to the South Shore were have a couple friends. Here's some of the work from that time:

(This photo is actually heavily influence for my professor, I hit a creative brick wall and used it as my way of getting through)

Then a big help came when I tried out the Olympus E 420 and found a DSLR I could actually hold due to its lack of a grip and light weight. This got me outside even more messing around taking all sorts of photos, and letting me use some of the skills that I was just starting to build upon before my disability happened with photography.

This brings me to the next big challenge in this journey, since the summer was ending I was about to go back to school with a semester filled with academic classes that I had to get through while on all these sorts of medications.

Cygnus Studios · July 1, 2009

What a compelling and inspiring story. Wow! Please keep this story going.

schmoo · July 1, 2009

Your story and the photos are just incredible. I'll be checking back as often as I can, that's for sure. I'm so inspired in many ways, thank you.

kyeezie · July 1, 2009

I am truly inspired. I have had similar issues as are going through and am really moved and inspired by your pictures and stories! Please keep it coming!

Sam · July 1, 2009

Some times we all get caught up with our personal problems and minor aches and pains. Then we see, or read about someone really struggling and it puts life into perspective.

Life is precious, and good health along with life is to be cherished.

I wish you the best and hope there is a cure and total recover for you.

Sam

NikonsandVstroms · July 1, 2009

First I want to thank everyone for the kind words they mean a lot.

I'm going to try and get through the fall semester with this post.

The first hurdle was I had to drive to school which I would have to do sometimes with a stop. And even with this my hands were hurting really badly so I went on another neural suppressant. This medication had a huge effect because it had many physical and psychological side effects. On the physical side a big problem is kidney stones, so I would always have tons of bottles of water with me (basically one of those lunch coolers filled with them) and drinking constantly.

On the psychological side it created a lot of anxiety and almost OCD type symptoms, so most things I did I would worry about incessantly. Additionally it worsened the symptoms of word hunting and trashed my short-term memory which is exactly what you need when you're trying to study for tests!

So I was very to drugged up and trying to get through classes, altogether it was by then a lab. To the classes where science and even for simple tests I had to study for two days straight. Basically it had to read the material enough times where even with no short-term memory I would be able to recall it. I guess basically forcing it into more of a long-term memory, but for a simple general education class I had to study like it was some major senior course.

Two of my other courses were a regular history course, and then an art history one based on new media. These were a lot easier because of the fact that I couldn't do the tests in class I would get take-home exams.

And to make sure I took some photos I had a directed study in digital photography. Basically a system force myself to shoot some so-called the stress I was nowhere near the mood to do it. I literally was in a constant state of worrying about something, not a great way to live, but it was my situation and I adapted. Even though mentally I was affected by the new medications how is able to lift a glass of water, eat solid food, and even drive short distances. Even though one day to get to the point where I had no idea what I wanted to do and felt like just escaping. I stopped before it got to my house and had some money in my bank account and thought how long I could survive down in New York up in Montréal with that money. But after about 10 or 15 minutes I continued the drive home.

Now for the more visual representation of what happened:

Before the semester started I took out my Nikon FE (because it has no group I could hold it) with an ultra wide angle lens I picked up for next to nothing and have some fun, here is one of the images from the day's shooting:

Then the first shoot for the class happened out in Boston with one of my friends:

she was out shooting for one of her projects as well

Then I started listening to a little too much Zoe Keating, she's a cellist who basically loops over her own music and I've noticed when I listen to it I get a little more out there was some my work.

Here's some that resulted in the beginning of the fall while listening to it

And a little bit later came this photo:

Then came one of the nice breaks in life and a huge markdown sale plus very nice parents led to a Fuji S5 Pro, this camera was too heavy for me really to hold but with a light lens, and both hands I could lift it up for a few seconds, or use it on my tripod. (I've gone through a lot of pain for my photos) this is a shot from the first night with the camera:

And I decided around them that I wanted to go out on the t like I did during the summer for my senior thesis, so for the rest of the semester I decide to take the opposite approach and stay around my hometown and the house where I spend a lot of time growing up.

Then came a couple images around my apartment and another one of the medication.

During the end of the semester for my new media class we were going to have a paper, but had the option of doing a smaller paper along with a project that had to do with new media, so I chose to do when based on macro digital photography and the benefits that the medium have for this style. My choice of subject was my 2007 Suzuki V-Strom 650 because I knew I would have to sell it due to my disability and wanted to have some more memories of it. These are a few of the photos from that series:

This all brings me up to December, about one year after all this started.

Diamond D · July 1, 2009

You have a really phenomenal eye for form, texture, and composition and it really shines in your macro work. Your processing is also very complimentary to your shots, I look forward to seeing more.

btw, the last shot of the first post (the red line from platform level) just JUMPS off the page, outstanding.

NikonsandVstroms · July 3, 2009

The stress and anxiety got really bad around finals time, basically I thought every single test was life-and-death considering that if I didn't do well would be added onto my senior thesis and other work needed the next semester which are readying new is going to be a lot. But again I hit the books way too hard and somehow got through it all, but this period of my life seemed extremely long and took a lot out of me.

Around the time I was done my girlfriend starting expressing some of her personal stress, which she said she hid for me to not try and bring me down anymore. But this all became huge and made for a very rough Christmas. The sad thing is we have someone helped you out so much, and whenever you try to do anything they push you further away. It was a horrible situation, but luckily I had some good friends that helped me, and told me things that I could do to help her even though she would always just ignore it. (The good news is we're still good friends)

But this means I got to go back home, after living on my own for years which was a big initial hit. I went out with one of my friends who offered to let me stay with her and her fiancé but I can accept the offer to be such a burden unless it was absolutely necessary and even though it sucks I could stay at home.

To deal with all this I went back into my photography, I just put on the MP3 player and when around Boston's old places I used to live, and just did a simple documentation of that journey:

So after this I basically spent the rest of the break doing little bits of photography here and there and trying to put a life together. Turns out a lot of other people are going through my situation of being back home but due to layoffs, but it was good having other people who could relate. So I tried to go out as much as possible and just hang out.

Now the semester has started and I'm try to figure out what to do for my senior thesis, this is a big six credit class so it requires large bodywork and I was going to do a 10 to 20 framed image show at the end. The first one came from listening to too much Zoe Keating again so the crazy ideas came flowing.

Listen to her music in a loop I started to create these images:

And as for the idea of going out on Little journeys are through Boston by that point this was the only image I had:

But through this time my health was deteriorating, I have some issues with my wisdom teeth and they became infected, which usually isn't a huge deal but when you are allergic to a bunch of antibiotics and on five or six other medications it becomes a huge deal. So they tried me on an antibiotic and within a few minutes I was having trouble breathing, no one was around in both my father and mother told me to call 911 where they sent an ambulance. It was a pretty weird experience all around, starting with one of the EMTs being a kid I used to play football with, but quickly they got me on oxygen and sent me to the ER. Once there they told me to do something to get my mind off the fact that I couldn't breathe so I took out the cell phone camera.

In total it's a series of nine images that I pulled out and actually put in to Photoshop, and did my little postprocessing using speech recognition and an optical head mouse (lots of fun) but I was really shocked of the quality was able to get, and the images can be printed up to 8 x 10 and this is from a two megapixel cellphone camera. This was a huge revelation for me. During my worst times I tried to use a cell phone camera but the results weren't to my liking. But since then I basically mastered how to get high quality results out of a point-and-shoot camera and this is like a big step back from that but still the same skill set. As I write this I'm remembering the spiel I wrote for my critique in front of the whole faculty basically going way too in depth about the technical aspects and limitations, I'll keep you guys from that page long description.

And so far this is now to February 2009

nightpixels · July 4, 2009

Thanks for sharing your story. I am glad that photography is helping you cope with your disability better. You are an inspiration to many people out there and a great photographer.

NikonsandVstroms · January 14, 2010

I thought this is the most appropriate place for these:

New insurance company wants me to try generics, so and that warning you see is an under statement for me. That and general life craziness has kept me from shooting/posting as of late :cry

Kian · January 15, 2010

Great pictures Jbeck. Stay strong & keep your spirits up!

Wicked_Dark · January 15, 2010

You have a tremendous and humbling talent. I wish you the best of luck with your situation and hope you can find the strength/time/inspiration to shoot again.

dadwtwins · January 15, 2010

What you have shared with us is extremely personal and a subject many would feel uncomfortable to read but glued to the story at the same time.

Your story with accompanying photos has been a wonderful experience for me to follow. You have put life in perspective for those that have daily challenges that most take for granted.

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ian408 · January 16, 2010

I'm still here. Incredible story.

Grainbelt · January 17, 2010

I read some of this on ADV, but it really hits home with the pictures presented here. Thanks so much for sharing.

NikonsandVstroms · January 23, 2010

So we are back at my senior thesis which well seems years ago now. This was a time of huge stress, the medications cause anxiety and add that to the 1 class which decided if I graduated or not. But I did pretty well, basically once every other week usually I would go out with the cell phone around Boston doing images of city life which was something of a challenge for me. I would do lots of images around here but if you notice people are not the center, so in addition to using a 2.0MP camera I tried to do a whole new segment of photography. Luckily it worked out, and I have a good collection of about 80-100 images. I was hoping to make a book and even have the cover done but the writing is what's killing me. I just got back into it and have about 1/4 of the book done which is like this thread just a lot more detailed.

At the mid semester review it was actually a bit of a shock to the faculty what I used as my camera and for the final I basically had no negative critiques which doesn't happen much for this class. And getting a solid A from one of the hardest graders was a good feeling, so now I have a BFA not sure how much that helps me in life but I have a college degree at least.

Then came the question what the hell do I do next in life, I was still stuck living at home since after breaking up with my girlfriend I couldn't afford a place of my own and just decided to try and expand my photography.

As a graduation present I got a cheap studio light kit and started playing around with that:

One of my main goals was to get away from the city life shots, I had done them for basically 5 months straight and even now I am just beginning to get back into this style of shooting.

I also lucked out while at the local camera store in meeting a local guy who is big into Ducati's and runs a site for them. This was right before a big Ducati track day up in NH and he let me come up and shoot it which for someone who had to sell his bike just a few months before was amazing, damn do I want a Ducati:

This became a huge time for me to experiment and expand my range of photography, another form I tried to work with was portraits with more traditional camera equipment:

And this takes us up to early June just a few weeks after I graduated.

NikonsandVstroms · January 23, 2010

And I think this thread fits for the photos that continue with my medical conditions.

I have severe sinusitis as I probably mentioned and I'm currently going through a sinus infection which has knocked me out.

The following are examples of my way of clearing my mind and forgetting about the symptoms for a time.

These are not portfolio shots to be sure but more of type of therapy for me in being productive with my time. I highly recommend to anyone if they come down with a cold or flu since it is the season for that, just grab even your point and shoot, go around your room and house and just look for interesting set ups. Who knows you could get an amazing shot, or worse case you just helped kill some time which usually crawls by.

Snowgirl · January 24, 2010

An amazing story accompanied by some terrific photographs. Thank you for sharing your life with us.

D0rk Angle · January 25, 2010

I had Junior Rheumatoid Arthritis when I was growing up for a while. The pain was so bad at times that I couldn't make it to the restroom. Originally misdiagnosed as "growing pains" ... so, I have an inkling of what you're going through.

Hang in there and keep on shooting, the pictures are wonderful and powerful.

NikonsandVstroms · June 10, 2010

I've been forgetting to update this thread when I do the one on ADVrider and the following is from me a few months back:

I'm getting better slowly so there is some light at the end of the tunnel. Right now for daily life it is more of an annoyance since I have adapted to the situation.

There are still 2 major issues though, the medication side effects which are again less pronounced than before. Now it just slows down my cognitive ability somewhat, while still pretty good I can not run full programs in my head as I use to. The other is a slight aphasia since my brain is a fraction of a second behind what is going out so the wrong word will come out. That last one pisses me off a bit but I just need to think of what I am saying before it comes out otherwise it has a slight gap or wrong word. Word hunting is a big pain but google helps a lot

I know about what I want to say and just search the similar terms to find it.

The other one is repetitive movements which really hurts my web design/programming. I did just get a new computer with much better speech recognition abilities so hopefully I will be starting some real work again soon. To get back into it I pushed through the annoying lag on my old set up and designed a full flash site which is getting good reviews along with studio photos for that site. It took awhile due to being 2 years rusty but after a few days I got back into designing and basic action script creating custom scroll bars and audio players.

The other annoying part with my hands is I can't lift my camera up for long periods which limits the easy money makers for me (event/wedding photography) as well as the fact that I need to sit down during any length of time to not over work my ankles.

Getting back to work will take awhile so my goal now is to be as productive as possible. Since I have skills/knowledge in photography one thing I am doing is trying to help out as much as possible. This includes the critique thread I did awhile back and now I am planning to do some free workshops to help teach people basic SLR techniques. Even at my worst I felt horrible having a month go by which was unproductive and being able to give back to the members of this site is one thing I would like to do. It has provided me with lots of entertainment throughout this time and also with help from inmates for various things in the real world.

As for photo work I've been trying to keep myself busy with a running series on the political climate in America and then various other shots/small series:

My insurance company tried me on many cheaper muscle relaxants all of which messed me up pretty badly leading to this "May Cause Dizziness" photo:

Flyinggina · June 10, 2010

Thank you so much for the update. The way you have dealt with a journey that none of us would wish to have is inspirational. Please keep us all informed.

Love the photos.

Virginia

NikonsandVstroms · June 12, 2010

Thanks, the beginning of this year was basically that "may cause dizziness photo" but this Friday I they had me try another muscle relaxant which basically knocked me out. My insurance company is being a pain since one medication works/doesn't mess me up but it is expensive.

But back to the work, recently I have been trying to focus myself more on specific areas each week or 2, first it was flowers, more recently landscapes:

And probably the biggest thing is I finally redesigned my website

http://jbeckphotography.com/

Nee7x7 · June 13, 2010

Your story and photos are so inspiring. But I'm curious...did you ever get a definite diagnosis? Maybe I missed it. Are you able to walk or do you have some sort of mobility aid? I don't mean to be nosy. It's just that I'm recovering from ankle surgery and I've been stuck in a wheelchair for two months and unable to drive a car and I have to depend on my husband to drive me places, which is a struggle because he drives for his job every day and doesn't feel like going anywhere on his days off. We live in a small rural town and our home is in a suburb, so I'm feeling very creatively challenged. I tried to shoot some flowers in our backyard, but when I attempted to wheel myself onto the lawn the wheelchair went into a low spot and nearly tipped over!

My recovery isn't going so well and there's a question of whether I'll ever be able to walk normally again. So where you've inspired me is that I see your photos of somewhat mundane things done so beautifully, so I guess I have no more excuses! I need to get off my pity party and try some new things instead of moaning about being stuck at home in the suburbs day after day. So thank you. I am going to work on being more creative in spite of my situation and hopefully be able to make some photos I can be proud of.

BradfordBenn · June 13, 2010

Thank you for sharing.

My journey through disability

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