My Body: Loss, Grief, And Recovery

RA Guy Adventures of RA Guy 10 Comments

To spare oneself from grief at all cost can be achieved only at the price of total attachment, which excludes the ability to experience happiness. -Erich Fromm

Grieving BatmanThere are times when Rheumatoid Arthritis Guy can’t help but feel like his body is dying on him. Sure, I know that a lot of the physical sensations can be chalked up to the symptoms of rheumatoid arthritis, and that my body is not dying in the “traditional” sense.

But with every loss I experience,  no matter how temporary that loss might be, it does feel like a little part of me is dying.

Every time I get out of bed and hobble across the room, it feels like part of me is missing. (Though I may wobble like a weeble, I’ve yet to master the part about never falling down!)

Every time I struggle to cut the food on my plate, it feels like a part of me is missing. (By default I’ve joined the Slow Food movement, but I guess this isn’t necessarily a bad thing.)

Every time an expression of pain inadvertently passes through my lips, it feels like part of me is missing. (Parents, please note: at times this show is definitely not rated PG-13.)

These are but just a few of the losses that I have been experiencing lately.

In stating these feelings, I don’t think I am being too negative. I’ve been there many times, believe me, stuck with the feeling that things will never get better. Neither do I think that I am being too positive. I have been there also, overly caught up with unrealistic thinking and believing that my rheumatoid arthritis will be gone when I wake up in the morning.

Instead, I’m at a place that is in between these two extremes. When it comes to these losses, this place is still relatively new for me.  It’s called reality.

As I begin to evaluate my feelings with this new found sense of clarity, I am starting to realize that I am indeed missing part of my old self. I am starting to accept these feeling for what they are – feelings of true loss. My feelings of loss are real; they are neither imagined nor exaggerated.

In order to work through these losses that I continue to experience as a result of my life with rheumatoid arthritis, I must allow myself to the opportunity to grieve.

I just finished reading On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Grief, by Elisabeth Kubler-Ross and David Kessler. (I love it when things start falling into place!) Although this book was originally written to address the grief of death, it’s principles are perfectly suited  to many other aspects of life,  including the losses associated with chronic illness. (Death is just one of the many losses we experience in life.)

What are the five stages of grief?

1. Denial

“Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of situations and individuals that will be left behind after death.” Wikipedia

It feels good to get past periods of denial, to fling open the doors to the real world and to take that all-important first step forward. I am learning, though, that this is the first, and not the last, part of the process. I have only recently begun to temper my feelings of euphoria and prepare myself for the many other emotions that are going to arise as I move forward through this cycle of coping.

2. Anger

“Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.” Wikipedia

A reader recently told me that after reading my blog, she realized how bitter she had become. I appreciated her words – but although my recent writings may not have necessarily conveyed many sentiments of anger, I definitely have had my fair share of  “angry-at-the-world” moments (and days, and weeks…).

However, I think I have reached a point where I allow myself to process my anger in a manner that does not hurt me or the people around me. Only by processing this anger am I able to move on. Anger is a normal. It’s the getting stuck in my anger that seems to cause a lot of problems.

3. Bargaining

“The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the person is saying, “I understand I will die, but if I could just have more time…” Wikipedia

“If only” are two words that I am going to stop using. I’m not the first person to write about how easy it is to remove certain pleasures from life and then blame their absence on illness. Sure, there will always be some some obstacles that are more difficult to overcome to others. But if I’m going to start making bargains that affect my quality of life, it’s going to be in order to trade up, not to trade down.

4. Depression

“During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect themself from things of love and affection. It is not recommended to attempt to cheer an individual up that is in this stage. It is an important time for grieving that must be processed.” Wikipedia

Depression in and of itself is not a bad thing, contrary to all the social and media messages that we are constantly bombarded with. (Just stop and take a look at all the television and print ads one of these days.) Smiles are important, but life is not all about smiles.

The most important message I gained from reading this book was the realization that depression is a normal part of the grieving process, and that I must allow myself to freely enter and exit periods of depression. As with anger, the danger comes not from the depression itself, but from getting stuck in depression and not moving on when the time is right.

5. Acceptance

“This final stage comes with peace and understanding of the death that is approaching. Generally, the person in the fifth stage will want to be left alone. Additionally, feelings and physical pain may be non-existent. This stage has also been described as the end of the dying struggle.” Wikipedia

Having finally reached acceptance on many personal issues before, I now know that acceptance does not always mean that something has finally be put to rest, once and for all. Instead, experience has shown me that, quite often, an issue will reappear. Once again I will move through the recovery process from denial to acceptance. This is not a sign of weakness – this is life.

(Please note, the authors do state that every one may not necessarily pass through all five stages, nor may they necessarily pass through the five stages in this exact sequence.)

Loss is something personal. Our loss is not something that can be compared to another person’s loss. If we try to compare our loss with another person’s loss, chances are that we will just deny ourselves the opportunity to fully experience and move through our own loss.

As I allow myself the opportunity to cope with my personal losses, I have no doubt that eventually, something beautiful will grow. And while I may not be able to fill in all of the voids, it just might be possible for me to allow these absences to become a part of the person who I really am – my complete self.

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

Sunday Break

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Because there is no such thing as taking too many breaks!

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Modern vs. Ancient. The  photo on the left was taken while looking from the Jin Mao Tower observation deck into the atrium of the Shanghai Grand Hyatt. (The hotel is located on floors 53-87 of the world’s fifth tallest skyscraper.) The photo on the right shows a stretch of the Great Wall of China located outside of Beijing.
China

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Here’s to healthy eating! Although I’m usually good about what I eat, I can always do better.

Yesterday for lunch I cooked pan-fried fresh trout with mint mango, oven-roasted beets, and balsamic cherry tomatoes. Not only did the flavors actually work together (I was working from scratch), but the assortment of colors on the plate was quite nice.

On my nightstand, waiting the be read, is The Flavor Bible: The Essential Guide to Culinary Creativity, Based on the Wisdom of America’s Most Imaginative Chefs.

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I am going to start looking into voice recognition software. Does anyone have any recommendations?

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

Surveillance, Seeing, And The Truth

RA Guy Adventures of RA Guy 9 Comments

Today’s post is dedicated to everyone who has supported me on my journey through life with rheumatoid arthritis.
Near and far, you know who you are.

Surveillance CamerasRheumatoid Arthritis Guy is convinced that we live in an Orwellian world of Big Brother. No, I am not talking about the fact that we are surrounded by surveillance cameras, both visible and hidden. Neither am I talking about the fact that every non-cash transaction that we conduct will probably be stored in some hard drive for who knows how long. Medical records. Phone calls. Emails. Text messages. No, I am not talking about any of these things.

What am I talking about, then? Well, I am convinced that anytime I make a statement claiming that some joint or some part of the body is doing better, that somewhere an alarm sounds – and the person behind the rheumatoid arthritis curtain immediately turns up the dial from “mild discomfort” to “extreme overload”.

I’m kidding, of  course (if only because even any explanation – like the one presented in the previous paragraph – would be just too easy!) Only yesterday did I write the following in my post: “my wrists are doing much better than they were just a few weeks ago”.

What happened just an hour after publishing these words to my blog?  Would anyone like to take a guess? (As if we really have to guess.) My hands flared up like almost never before.

Later in the afternoon, as my joints were being examined by my physical therapist, she asked me if I was sure about my request that the entire session  focus on my hands. While my wrists, knuckles and fingers were visibly inflamed and sightly bent out of share, so too were my knees and my elbows. (One of the few good things about having extreme pain in one area is that if it is really bad, it can actually wash out lesser – but still substantial – pain in other parts.)

Right before we started I turned my hands palm-side up, as I want to point out the specific areas that were experiencing the most pain. Both the therapist and I were shocked to see what looked like thick purple marker lines all over my palms. Well, I learned a new word yesterday: vasculitis. This is when blood vessels in the hands become inflamed and burst open, causing dark purple spots to form under the skin. (Bruises, basically.)

Needless to say, 90% of the session was spent on my hands. (The remaining 10% was divided between my knees and elbows.)

As I watched television during the evening, and as my hands felt like they were roasting on an open fire (chestnuts, anyone?), I realized that once again I was focusing on a certain thought that frequently seems to take center stage whenever I am in the midst of a major flare.

In this world of constant surveillance and electronic gadgets that we live in, it is sometimes easier to see everything except that which lies right before our own eyes. Along these lines, I feel very hurt that some of my family members continue to deny, rather than accept, the reality of my life with rheumatoid arthritis. To them, my illness truly is  invisible. They cannot see it.

This past week I read a lot of comments and received private messages from people thanking my for my 60-Second Guide to RA. Many told me how this guide helped them talk to their friends and family about their life with chronic illness and disability. Up until now, I had only privately observed, with irony, the fact that some of my own family members know next to nothing about  my life with RA – despite my repeated attempts to the contrary.

I was a little hesitant to write these words, as they are very personal in nature – but many times during the past few years I have heard similar sentiments  expressed by others living with chronic illness and disability. For this reason, I decided to go ahead and write about this topic.

And in doing so, I have come closer to seeing and accepting some of the truths in my life, that lie right before my own eyes.

Yes, it is the truth that my disability goes unrecognized by some people who I consider to be close in my life.

Yes, it is the truth that this often causes me a lot of personal pain.

But what I guess to be the final truth on the matter is that ultimately, I need to accept this for what it is – something beyond my control – and move on, once and for all.

Because in the end, every second spent fretting about the actions/non-actions of other individuals – from close friends and family to strangers on the street – is one second that is better spent taking care of myself – body, mind, and soul.

This is easier said than done, I know. But sometimes, the most important thing is to take that first step.

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

R-H-E-U-M-A-T-O-I-D

RA Guy Adventures of RA Guy 8 Comments

Rheumatoid Arthritis Guy spent last night watching the National Spelling Bee, and was blown away with the young kids who correctly spelled difficult word after difficult word. If I were competing, I don’t think I would have even come close to making it to the final round! (Unless, of course,  the “Wheel of Fortune” rule was one of the questions contestants were allowed to ask the judge. May I have a “r” please?)

Had the spelling bee focused on rheumatoid arthritis related words, however, I just might have had a shot at winning the championship trophy. Let me show you why…

Methotrexate.

Ankylosing Spondylitis.

Leflunomide.

Sjögren’s Syndrome.

Cytokine.

Plantar Fasciitis.

Synovial Fluid.

Interleukin.

Arthrocentesis.

Hydroxychloroquine. (Oh wait, there’s an easy way to say this: Plaquenil.)

Sulfasalazine. (Oh wait, this too has an easier name: Azulfidine.)

Corticosteroid.

And the list goes on and on…

Seriously folks, who comes up with these names? On top of having to deal with the actual illness of rheumatoid arthritis, we’re also required to be spelling experts? (Never one who wants to be left behind, I think I’ll go ahead and add a  spelling coach to my Team RA.)

(By the way, the winning word in last night’s spelling bee was “Laodicean”, which means indifferent or lukewarm – especially in matters of religion.)

I got to thinking, what exactly does “rheumatoid” mean. After all, I say it and write it multiple times during the day, and I am the Rheumatoid Arthritis Guy. Should I not have a clear understanding of this word “rheumatoid”?

So I went to my bookshelf and pulled out Volume II P-Z of The Compact Edition Of The Oxford English Dictionary and its accompanying magnifying glass. (Those of you who are familiar with this home edition of the OED know that if I was able to do the two tasks I just mentioned, then my wrists are doing much better than they were just a few weeks ago. Now,  if only my knuckles decided to settle down as well…)

Rheumatoid (rū-màtoid), a. [f. Gr. RHEUM (flux, that which flows; a stream; discharge) + OID.] Having the characters of rheumatism. Also, suffering from rheumatism.

Chiefly, in rheumatoid arthritis, a chronic disease of the joints characterized by changes in the synovial membranes, etc., and resulting in deformity and immobility.

1859
A. R. Garrod Gout AV. 534 Although unwilling to add to the number of names, I cannot help expressing a desire that one might be found for this disease, not implying any necessary relation between it and either gout or rheumatism. Perhaps Rheumatoid Arthritis would answer the object. 1866 Tanner Index of Diseases 233 Rheumatoid Arthritis…Synon. Rheumatic Gout: Chronic Rheumatic Arthritis. 1871 Practicioner VII. 87 The judicious practicioner will regulate the action of the bowels of his rheumatoid patient by proper diet. 1876 Bartholow Mat. Med. (1879) 224 The joints become the seat of rheumatoid pain.

So Rheumatoi-dal a., Rheumatoi-dally adv.

1889 Lancet 9 Nov. 947/2 Repeated rheumatic attacks may beget a condition commonly called rheumatoidal. Ibid., It is of such sufferers that we constantly ask ourselves..is this case going off rheumatoidally?

Now, you too can become a RA Spelling Bee Champion!

Are there any other hard to spell rheumatoid arthritis words that I forgot to list?

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

Design Meets Disability

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Book Cover Design Meets DisabilityRheumatoid Arthritis Guy recently came across what seems to be a wonderful book that combines the topics of design and disability. (I must admit that I have not yet read the book , but I hope to soon…) These are two of my biggest areas of personal interest, so I am quite eager to get my hands on a copy of this book.

Design Meets Disability, by Graham Pullin, was published last month by MIT Press. The book explores the potential for innovation that still exists when designing products to enhance the daily lives of people living with disabilities.

Eyeglasses have been transformed from medical necessity to fashion accessory. This revolution has come about through embracing the design culture of the fashion industry. Why shouldn’t design sensibilities also be applied to hearing aids, prosthetic limbs, and communication aids? In return, disability can provoke radical new directions in mainstream design. Charles and Ray Eames’s iconic furniture was inspired by a molded plywood leg splint that they designed for injured and disabled servicemen. Designers today could be similarly inspired by disability.

In Design Meets Disability, Graham Pullin shows us how design and disability can inspire each other. In the Eameses’ work there was a healthy tension between cut-to-the-chase problem solving and more playful explorations. Pullin offers examples of how design can meet disability today. Why, he asks, shouldn’t hearing aids be as fashionable as eyewear? What new forms of braille signage might proliferate if designers kept both sighted and visually impaired people in mind? Can simple designs avoid the need for complicated accessibility features? Can such emerging design methods as “experience prototyping” and “critical design” complement clinical trials?

Pullin also presents a series of interviews with leading designers about specific disability design projects, including stepstools for people with restricted growth, prosthetic legs (and whether they can be both honest and beautifully designed), and text-to-speech technology with tone of voice. When design meets disability, the diversity of complementary, even contradictory, approaches can enrich each field.

A few days ago, a young guy my age passed me on the sidewalk as I was getting out of a taxi. He had the coolest set of forearm crutches that I had ever seen!!! As I pulled my own set of (now boring) crutches out of the back seat, I continued to stare at his crutches as he walked down the block. (Talk about crutch envy!)

Only as he turned the corner did I notice that this young man had only one leg.

Almost immediately, I felt a slight tinge of guilt pass over me. Was it okay for me to be envious of this young man’s crutches?

So it was with some relief, and much happiness, that this morning I saw a video of athlete, actor, and activist Aimee Mullins talking about her collection of prosthetic legs. She wants them to be objects of art. (She even refers to some of her prosthetic legs “wearable sculpture”, which they definitely are!) She wants people to look at her prosthetic legs.

[YouTube video]

“A prosthetic limb doesn’t represent the need to replace loss anymore. It can stand as a symbol that the wearer has the power to create whatever it is they want to create in that space, so people that society once considered to be disabled can now become the architects of their own identities – an indeed continue to change those identities – by designing their bodies from a place of empowerment.”

This video is definitely worth watching – if only to see the part midway through – where Ms. Mullins asks the audience what exactly is a disability? “I mean – people – Pamela Anderson has more prosthetic in her body that I do, and nobody calls her disabled.” (Her words, not mine!)

In closing, I would like to ask people to take a look at Walking Wall by artist Harriet Sanderson. This permanent art installation is located in an orthopedic clinic in Seattle, and is comprised of hundreds of ash wood walking canes. This installation is beautiful both as a visual object and as a example of design meeting disability.

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