First, I’d suggest that you go to this post and read this article by Christine Miserandino:
Then, there is a website where someone has created a “game” you can play to understand how life is for people with disabilities, and how the “spoon theory” works for us:
http://thespoontheory.tumblr.com/game
I actually learned about this theory from one of my dearest friends Paula, when she was diagnosed with Fibromyalgia. I started my journey with arthritis when I took a fall down some cement stairs back in 2001. I bashed my head, and in the process of doing so, my neck was injured. A few years later, I was diagnosed with Multi-level Degenerative Disk Disease of the C5, C6, and C7 of my vertebrae. Over time, it has become progressively worse. Like other members of my family, and my ancestors, I have also had to work with arthritis in my knees, hips, hands, shoulders, and of course in my neck.
Most people look at me, and don’t see me as having disabilities. It doesn’t help that I came from a long line of African American women who modeled for me the need to always appear strong, no matter what you are feeling, or what sorts of pain you are carrying. You don’t let on that you are suffering, you don’t show it–no matter what.
Saying the above reminded me of some of the rules of the natural world, wherein wounded creatures learn to stay under the wire and off the radar of predators. Rabbits teach their young, early, to run in a zig zag sort of pattern in order to avoid those who might be chasing them.
Yet, even with all that in mind, I have found that as a therapist, it’s often helpful to clients, and ultimately to myself to be able to be real and genuine about what’s going on for me, in order to model that even if I “bare my throat” as it were, I don’t have to be afraid of doing so. In doing so, I might create a sense of hope for my clients, as well as showing ways that they are not alone.
I’ve been dealing with chronic pain for the last 13 years. It started out as just some pain in my neck from the fall I took. Over time, this pain has become at times, nearly debilitating. While I am comfortable with sharing what’s going on for me, I also have learned to be practical, accepting, and real with myself. In the last few months, my neck issues have, due to the nerves involved, moved to other parts of my body–my shoulders, arms, and various joints in my hands, I also have headaches that are so severe, I cannot think, or focus very well.
Then, while in the course of writing this article, I had a car accident, that further exacerbated the pain, by adding whiplash to the mix. At times now, pain is near to unbearable. Thanks to acupuncture, a chiropractor and an amazing massage therapist friend of mine, I’m getting through it in a much better way than expected.
Dealing with all this is similar to the stages we go through when we experience a trauma or a death. At first, I didn’t want to believe that this was happening to me, I spent a few years in disbelief, thinking that it would just get better and go away. It has not.
Then, I became angry about the whole thing, I thought about all sorts of ways that my body was failing me, or how my body had become my enemy. I went through various stints with physical therapy, chiropractic, pain medications, etc. etc. etc. While all of these things helped in various ways, they couldn’t change what was happening. I had to just let go of the anger and face things–mind you, it wasn’t as easy as that sounded.
The “bargaining” phase for me has arisen a number of times. I think, what if I’d just known sooner how this would effect me? What if I’d done a few things differently in the beginning? What if I could just…what? What happened has happened. The knowledge of what was going on for me physically came a few years after the original accident, I couldn’t have known or predicted that it would go this way. If I had done a few things differently perhaps it wouldn’t be as bad as it is now…what if…? It is no use, what is, is.
A year ago last Spring, the depression hit me–hard. I became very overwhelmed with not only what was going on for me, but the fact that I felt I was getting “old”, and that life was passing me by. At that time, I was alone (as in not in an intimate relationship), living in a house with roommates. I fell into some patterns of behavior that were less than helpful. I’d also been taking Hydrocodone for the last few years, and I went through my days in a sort of cloudy haze. Along with this, I’d become much spacier than usual, I missed appointments, double booked myself, and felt that my work as a therapist was suffering.
Given that I have been working for myself for a number of years, this was really scary. I began to lose clients, and my self image began to falter greatly. I wasn’t what I would call suicidal, as I knew that wasn’t the way to go, given that my twins were just getting into adulthood, and needed to still have my love and guidance. I got through days and nights without feeling much of life. Yet, I have remained on this side of the veil.
Because I am an introvert, very few people have known of the “saga” I have had in my life over the last 3 years. I won’t go into all of that now, I’m here to say that as I have come to the place of acceptance, things have began to feel lighter. I am facing the realities of aging. I’m aware that I’ve been overweight most all of my life, and I’ve always known that losing weight could alleviate some of the pain. I eat healthfully, and my weight is going down. I know that there are choices I could have made along the way, but, here I am, what’s past is past. I have to accept where I am in my life, and make better choices now that can benefit me (hopefully) in the long run.
So, part of my life now is just being who and how I am now. I have always striven to be loving, warm and kind. I refuse to allow my pain to take away the things about me that I love. This is who I am, I have worked at becoming who I am. I love the work I do in the world, though I’ve had to cut back some to preserve my strength.
Which brings me to the spoons. Each day, I start out with a number of spoons. I’ve never really put a number on how many I have, as each day is different. If I get a good pain free night of sleep, I have more spoons. If I have trouble sleeping, the next day may find me lacking. Either way, it’s helpful to me to have a way to understand and further accept my limitations, and in a way that feels good and holistic. I also feel that it gives me permission to take better care of myself, to put myself first so I can still show up in my world.