Clark Middleton: Miracle Mile

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Miracle Mile was a one-man play performed at the Theater Row in New York City during the Fall of 1997. The New York Times review called the play “an enriching chronicle of a man who refuses to let the world take him at face value.”

“Actor Clark Middleton wrote this autobiographical dramatic monologue in collaboration with Robert Knopf. Stricken with juvenile rheumatoid arthritis at age four, Middleton enacts his early painful experience — painful physically and emotionally. He takes us through an adolescence complicated by physical difference, his interaction with medical professionals over the years, and his craving to become an actor. Middleton struggles with the medical establishment, the pain and humor of coming-of-age, and ultimate self acceptance. Eventually, he was able to have both hip replacement surgery and a career in theater and film. The play is funny, poignant, and instructive.”

Video clips from Miracle Mile are available on the web page set up by New York University’s Literature, Arts, and Medicine Database, or by clicking on the image below.

MiracleMile

[The above quote and image are from New York University’s Literature, Arts, and Medicine Database, available at www.litmed.med.nyu.edu]

Walking, Step By Step

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This post is dedicated to everyone who has participated in an Arthritis Walk, who is going to participate in an Arthritis Walk, or who has sponsored someone participating in an Arthritis Walk.

WalkRheumatoid Arthritis Guy loves to walk.

During high school I lived in an old medieval city in northern Italy. I would take the funicular to the walled upper town, pass under the stone gate with the winged lion of St. Marks (back in the times this city – Bergamo – was part of the Venetian City-State). I would spend hours walking around the narrow streets and along the top of the tall stone wall. The Alps were visible to the north and the plains of Lombardy were visible to the south.

When I was in college in New York City, I would take long walks starting on the (upper!) upper west side. Sometimes I would reach Lincoln Center. Sometimes I would reach Times Square. (This was back before the Times Square of today, when it was still the land of three-card monte, fake watches, and peep booths.) Once I even reached Battery Park at the tip of Manhattan. The best park of walking in New York City was that no matter where I ended up, I could catch a subway and zip back home.

In grad school, I would walk along the Charles River in Boston after the last snow had finally melted and the air had turned warm. (If I remember correctly, there were usually about two weeks of spring between the loooong cold winter and the arrival of summer’s mugginess.)

Once, while visiting Beijing, I abandoned the tour guide and the taxi and opted instead to use my feet and my map. (One of the things I enjoy most about visiting a foreign city is just walking around for hours on end and getting a true taste of the city – something that the main tourist attractions do not always provide.) This walk was one of the few times that I truely got lost, and the language barrier did not help a bit. Still recovering from jet lag and with the temperature hovering in the low teens, I somehow confused Guang’anmen Wai Dajie road with Guang’anmennei Dajie road.

This past March, my thirteen year-old nephew (he is a homeschooler, and is very interested in nature studies) and I hiked about 20 miles round trip in Pt. Reyes National Seashore, just north of the Golden Gate Bridge in Marin County. We spent the night in a small tent on a cliff overlooking the Pacific Ocean, in Wildcat Camp #7. (Hint: go during the week and chances are that you will not only have the best campsite, but you will also have most of the trail and campground to yourself.)

So since one of my favorite things in the world it to take a long walk, it can be quite a challenge for me when I go through periods where the distance I am able to walk quite limited.

Two days ago I went to refill my Arava. I took a taxi door to door (where I live, Arava is only available through the authorized distributor on the pharmaceutical company) and entered the office to buy my medicine. As luck would have it, the credit card machine was not working correctly, and I had not taken any cash with me.

I decided that since it was a sunny morning, I would walk to the nearest ATM machine – located about one large city block away. Every step I took caused a very sharp pain in my heel (later that day, my physical therapist would tell me that this a sign of plantar fasciitis, a painful (are you for real???) inflammatory condition of the foot). Eventually I made it to the ATM machine and back.

I don’t know if this is was sign of my slowness or a sign of the technician’s speediness, but by the time I got back a representative from the credit card machine company had already arrived and fixed the machine. Great.

As I look back on this walk of a couple of days ago, I am beginning to realize that this walk I took was wonderful, in its own certain way. I was aware of every step I took. (I had no choice, with the pain of every step.) While it may not have been as “grand” as some of the previous walks I described, I have no doubt that it will be a walk that I look back upon many times in the future. And I remind myself, that the pleasure of walking should not be measured by the total distance walked – but should instead be measured by the beauty of each step.

Please visit the Arthritis Foundation’s Arthritis Walk Web Page to find a walk event near you!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Panic In The Sky!

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PanicRheumatoid Arthritis Guy recently set out to gather information about the Superman comic book “Panic in the Sky”. (This time I decided not to venture into the comic book forums, and instead limited my sources to Amazon. Miss Waxie, I finally learned my lesson!)

Here is a little bit of what I found:

“Don’t confuse 1992’s Superman: Panic in the Sky! with the Adventures of Superman television episode starring George Reeves, in which Superman stops an asteroid on a collision course with Earth. The epic Panic in the Sky story arc, chronicled in eight parts, was a crossover event which was published in the four Superman titles…”

And “Panic in the Sky covers Maxima’s conversion to good guy status and also paves the way for Superman and Maxima joining the new Justice League, in the post-Giffen/DeMatteis era.”

Are you panicking yet?

Seriously though, I was thinking about panic because during the last couple of weeks I had quite a few panic attacks. As anyone who has had a panic attack before can tell you, they can be very scary and unpleasant events. (Having them in the midst of a rheumatoid arthritis flare is even worse.)

I have noticed that when my panic attacks come, they usually spawn like a weird alien – increasing out of seemingly nowhere both in terms of their frequency and severity. Rheumatoid Arthritis Guy is proud to announce that once again, he has beaten the Panic Attack Monster.

But, I must note – that this is a battle that I have fought many times before. It usually coincides with my rheumatoid arthritis crisis moments. During this period of healing and recovery that I am recently entering, I plan to dedicate a part of each day to learning new methods that will help prevent a recurrence of these panic attacks.

A few years ago, soon after I was diagnosed with rheumatoid arthritis, I was in the midst of a major flare. One though continued to pop up again and again in my head – If I could only transplant my head onto another body, everything will be okay. I used to think it was absoutely silly for me, a grown man, to be thinking such a thought. Then I begin to hear from other individuals living with chronic pain that they too often thought the same things.

Upon accepting that I could not undergo a head transplant (hey, at least it sparked a period of science fiction reading that was fun!), I slowly began to come to terms with the concept that this way my body, for better or for worse. (If only I had signed a prenup before I was born…)

Initially, when I would reaffirm this idea to myself – the panic attack would start. An overwhelming feeling of claustrophobia would overtake me, and the only thought on my mind was I have to get out of my body, now!

Through the years I have gotten much better at accepting the chronic nature of my illness. Along with this acceptance went the realization, once again, that this was my body and I could not escape it or exchange it for another one. Being able to tell this to myself without provoking a panic attack was a hugh achievement.

Still, during the darkest moments of my most severe flares, thoughts of wanting to escape my body continue to appear, along with the panic attacks. Windows are opened to allow fresh air into the room. I lay down on the bed and try to concentrate on deep breathing. I surround myself with music and art books that can be use to create a distraction during these moments of heightened anxiety. Though frightening, these panic attacks eventually pass. And with each new panic attack, I get just a little better at coming out of them more quickly, until eventually they subside.

Right now I want to tell myself that these panic attacks will never return. But I will settle with the comfort in the knowledge that if they do return, I will get through them, like I have already done many times in the past.

If you too have faced panic attacks and have your own tricks and methods that help you cope with them, please do share!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Superhero Toy Chest

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LaserThe other day Rhuematoid Arthritis Guy was asked if he wanted to play with a real laser gun! Would a superhero ever turn down such an offer? Of course not. So I donned the green goggles (everything around me all of a sudden looked like it had been slimed by the Joker) and had at it. All I needed was a safe full of money to crack into.

The electrodes had just been removed from my ankles – for about twenty minutes electrical currents of varying intensity were being delivered to my body. (It’s always interesting to see the look on the technician’s face when they realize just how far up they have to go in order for my nerves to register any sensation of the pulsating current.) And even though I had been warned that five minutes into the session there was going to be a change in polarity – please don’t get scared – I still found myself letting out a short shriek of surprise when that polarity change came.

So while I played with the laser gun (hold in one place and press down on the button until it beeps in approximately two minutes, then move to another point and repeat) the technician took out the ultrasound device and rubbed it around my tendons. The metal surface would have been quite cold were it not for a large dab of anti-inflammatory gel that had previously been applied to the spot.

In between the different treatments on my hand and feet, warm water bags and towels were wrapped around my wrists and ankles to keep them warm. With the inflammation of the past weeks the circulation levels have dropped considerably, causing my hands and feet to plummet to seemingly sub-zero temperatures when left uncovered. (It amazes me how one area – the joint – can feel like it’s on fire while the surrounding area feels like it’s frozen.)

While I would like to say the above is a typical visit to a superhero spa (leave those wax strips right where they are!), I must confess that this was one of my recent visits to the physical therapist. I have been going every other day for sessions that last between an hour and a half and two hours.

Yesterday, in the room next to me was a young rugby player – bearing his latest sports injury as a badge of honor. I soon realized that they entire rugby team goes to this clinic on a regular basis to treat their most recent war wounds. I’m just waiting for one of them to ask what sport I was playing when I got hurt. This time I’m going to be a rugby player – from the opposing team!

My physical therapist gave me a Sammons Preston product catalog the other day and marked off a list of items I needed to get.  Last night I ordered some ulnar protection gloves to sleep with, some padded gloves to use with my crutches, some different types of wrist wraps, padding grips for my utensils, and a really cool knife! As I flipped through the catalog I was amazed at how many types of assistive devices exist. (It was almost as cool as flipping through Best Buy’s Sunday flyer.)

Physical Therapy Toys

On a related note, this past weekend I stumbled across FunkyArthur, a British online retailer which specializes in modern mobility equipment and arthritis aids. It’s sort of a cross between the Museum of Modern Art and Walgreens. Check it out!

I still have quite a few physical therapy sessions scheduled. The first goal is to bring down the inflammation on the ankles and wrists, followed by the knees and elbows. Once the inflammation seems to be under control, we plan on dedicating some session to strength building exercises. The first few sessions have helped quite a bit and I am looking forward to the upcoming session.

If you have any interesting stories of physical therapy, or have your own great assistive household device that you just can’t get by without, please do share!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!