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!

Comments 10

  1. MissDazey

    RA, just like LIFE itself, is a balancing act. I do understand as I have gone through the 5 stages of grief myself when dealing with RA, OA, and other illnesses. Also when dealing with divorce, losing love ones, or hearing about a dear friend having cancer or heart failure.

    No one has asked my advice, but if asked… “Keep on doing what is good for you and only you. Take baby steps, little steps and progress do get you to the finish line.”

  2. Laurie

    You are my favorite superhero!
    As a nurse, I have known about the five stages of loss forever. As a fellow RA patient, I became even more familiar with them, they rotate through my life on a regular basis, sometimes even daily. I try to throw myself a pity party every so often, but I just can’t stay there for long. There is always someone else out in the world who is worse off than I am, which throws me in to a sixth state of shame. Everyone has good and bad days, I just try to make the most of the good ones and carry on.

  3. WarmSocks

    Knowing those stages can be very helpful. Thank you for pointing out that some of the stages get re-visited. I still find myself bouncing back to denial every now and then. But life goes on, and so do we…

  4. Jessica

    RA Guy, thank you for this article. So many of us with RA have felt this sense of loss for our former lives and bodies. It’s comforting to know that we are not alone. You are indeed a superhero because despite the difficulties and obstacles in a typical day, you keep going and moving. Big hugs to you!

  5. Steve Kane

    I have always believed that if you don’t ask “Why me?” when things go well, you shouldn’t ask “Why me?” when things fall apart. I am starting to believe that my (as I have been repeatedly told) pessimistic life attitude has helped me deal with the last 20 years as an RA’er. Life isn’t fair. RA sucks. But not as much as a couple other things I could name. Hang tough, bitch when you need to, smile when you can. Steve

  6. MorethanRA

    Hi, I am glad you posted about this. I was just crying on the phone with hubby, I am still grieving again lol, I am revisiting some of these phases. It is so sad to me sometimes how I feel RA is taking over everything in my life, I know is not true but it surely feels like it lately. Thanks for all you do, you and some of the other RA warriors/ superheroes keep pushing me to take a stand against this horrible disease.

  7. Jerry La Bathe

    When I first learned about this disease I asked Jesus “why me?” And he answered “why not?” This web site and your blogs are really helping me through these hard times. I have a lot of anger and my wife pointed this out tonight. I have been taking it out on her and didn’t even realize it! (I TOLD HER NEXT TIME JUST PUNCH ME, LOL) I am gong to talk to my Ga about seeing someone to help me with this issue. I pray to God to Change my heart and take away this anger and help me accept this disease. I never was like this I was a happy go lucky guy, now I am bitter and have no Patience. I don’t like it!

  8. SKRdad

    Wow. Thanks RA Guy. You are also my favorite superhero….

    When I was diagnosed, I never asked why me. I just looked at my doctor And told him ok, tell me about my new reality. I have always seen life as a fluid, changing thing. When you look at it that way, it isn’t loss, it’s change. Inevitable as the tide… As a father, I want my kids to be doers, not victims. How can I expect that from them if I don’t live what I preach? So yes, some days are bad but I just put one foot in front of the other and keep doing what must be done… Having said that, I do think denial is a place I visit often. I make plans as if nothing had changed and I was still Superman. But nowadays, I have to settle for being Batman. Brute strength and stamina must be replaced by gadgets and craftiness. Heh…

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