For nearly four decades, I viewed disability through a lens of limitation. For me, that shutter had only two settings, open or closed, a.k.a. able or disabled.
Some years, I fully embraced the label of disability, assuming it as my identity. And then better health would return. Always, I believed the return permanent, and it never was.
My ego had this to say: “You are better and can do more so do it.” No matter the state of my health, I believed my ego. Sheer stubbornness prevailed more often than not. Yet, disease processes can only be suppressed for so long.
My ego was not without an opinion on poor health, either. “You can get better. You have before. So do it.” Sometimes, remission lasted for years but always, disability returned.
All the while I was struggling with the disability label, I kept accumulating medical diagnoses. I gave them little notice other than to put them in a neat stack for later consideration, which I never did.
Rather, I rode the roller coaster of disability as if it were the only experience of my life. Until one day, not too long ago, I got off. No more struggling to rise only to rush back down. No matter how long it took to climb up, the trip to the bottom never lasted long enough.
Undoubtedly, my ego had an opinion but I did not listen. Rather, I followed my instincts: why not float upon impermanence? Stay open to experience. Meet it with curiosity. Impermanence will take you on the ride of your life.
And then the bottom fell out, as I wrote in my last post almost three months ago. I’m still afloat, which is not easier than riding on a roller coaster just different. I sail with the current rather than setting a course for lands lost or for shores beyond my reach.
I discover myriad angles in the ever widening lens of impermanence, even if the dawning day is dark. Always, there is a sliver of light, and if I’m mindful, I will discover it.
Familiar disease labels are never far off but I do not seek them out or try to steer away. They will find me, and I will meet what they have to offer. Just recently I added a new label, rheumatoid arthritis. It offers yet another perspective on the Zen koan, “The obstacle is the path.”
I stay the course, scanning dark skies for the inevitable sliver of light.
Autoimmune disease— lupus, Sjogren’s, and rheumatoid arthritis— are quite active currently as is spinal cord disease (myelopathy). Working with degenerative disc disease, myelopathy has permanently affected my gait (ataxia) as well as the reflexes in my limbs (hyperreflexia).
Each label is its own lens of limitation. To attach to a label or to avoid it will not change the experience it brings. Labels float in and out of life. I aim to let them do just that.
The C2-C4 donor bone fusion is still “not taking” but “my films look good” my neurosurgeon tells me. The fusion hardware holding the donor bone in place can last as long as 10 years. Even autoimmune disease is doing its part as it provides more than enough inflammation to assist the fusion process. My neurosurgeon remains optimistic and so do I.
Sliver of light in a sea of labels.
All of my medical practitioners support my daily, gentle yoga practice, no matter the disease experience of the moment. Not every day am I able to perform each yoga pose completely but every day I practice yoga.
In yoga and meditation, there is only the lens of impermanence, a mindset of acceptance that no thing ever stays or is ever the same, no matter how many times met. I agree to medications that I once rejected: a weekly dose of methotrexate and a small, daily dose of prednisone. The methotrexate requires monthly blood test monitoring.
Inflammation may be assisting the donor bone fusion but it is damaging my joints and tissues. Accepting the medication is as essential to maintaining my independence as are yoga and meditation. In an open-ended mindset, labels pass freely.
In every moment there is movement, a breathing in only to let go.
As in meditation, the breath in yoga is critical to sensing the body’s signals. With my breath I soften the pain of movement, all the while experiencing its energy. Every day is a new communication with the body, no matter how many yoga poses I complete or how long I meditate.
Even on those days when there is only a sliver of light, the impermanence of each experience is worth the ride. After all, I am looking through an ever widening lens with myriad angles.
KM Huber's Blog 
Hi, I love your perspective. You may or may not know of http://www.myelopathy.support and http://www.myelopathy.org. My thoughts are with you – a fellow myelopather
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I’m so glad to hear from you again, Karen. You’ve been on my mind. Have I shared my favorite affirmation with you before? (Favorite in the sense that it got me through a few low years). It is:
I’m right where I need to be and it sucks.
We don’t have to like the obstacle in our path, only accept that it is our path. Thank you for the reminder.
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Hi, Janet!
I’ve been thinking of you as well. Thank you for sharing your affirmation; it is a keeper! You can bet it will get a “workout” here. 😉 Thanks so much for stopping by.
Karen
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Lovely photographs. It is good to hear from you again.
I have been thinking, lately, about changing the perspective on illness. We are always told it is a battle of some kind (fight the cancer, beat the disease, overcome the pain). And I’m a pacifist! It seems to me you are moving not so much toward acceptance of the disease symptoms as toward understanding of the body’s process, which heals and then ebbs a bit, energies rising and decreasing in ways you are learning how to be attuned to. Less a fight than an understanding that leads to wholeness in unexpected ways.
Does that make sense?
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Makes complete sense, Ann. Your comment captures beautifully what I’m discovering: it is not a battle at all. It is communication–at times it feels like a dialogue–staying open to the signals the body sends without labeling them. “Sitting” with emotions (meditation) and “practicing” with physical sensations (yoga) creates a mindset of understanding. It is like staying curious for no sensation is labeled good or bad. I’m able to observe, and observation broadens perspective, leading to “wholeness in unexpected ways.” Thank you, Ann.
Karen
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A dialogue, that’s a better metaphor than a war zone!
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So good to hear your voice again.
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Hi, Audrey! Appreciate the support and encouragement.
Karen
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You know Karen, I just blogged and it had been three months for me also. When you don’t feel well, writing a post does not ride high on our to do list. I’m sorry to hear about your sluggish fusion and this new diagnosis of RA. But I cheer you on as always for not giving up. Baby steps my dear friend. And yoga is an excellent way of stay limber besides all the rest of its healthful benefits. Good for you! I know each day is a challenge, but I applaud you for all your efforts. Thank you for your inspiring post girlfriend!! ((Hugs)) 🙂
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Yes, Karen, I saw you had a new post. Always look forward to reading your work. I hope your day to day is less a roller coaster ride and more an even flow. I think of you, often.
As I mentioned to Dona, I don’t have much hope for the fusion but the yoga is definitely key in keeping that hardware in place, at least according to my neurosurgeon. As you know, neurosurgeons vary in what does and does not work. 😉 At first, I was shook by the RA diagnosis but I decided to view all as autoimmune disease, which is all about the body attacking itself. Specific labels be damned. 🙂 Thanks for all the support.
Karen
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Good to hear from you again Karen. There is profound inspiration in your words – in the way you express the meaning of what is happening for you through the ‘ever widening lens of impermanence’ – wonderful, poetic writing. All the very best from the antipodes!
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Hi, Matthew!
Your good wishes and kind words mean a great deal to me. You know how much I admire your work. Have not been commenting on your posts but I have been enjoying them, as always. They have been known to make my day. 🙂
Karen
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So good to hear from you again, Karen. I often think about you and your positiveness in spite of adversity.
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Hi, Diana!
Always good to see you here. Appreciate your thoughts. I, too, think of you.
Karen
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Such a poetic and thoughtful post! I absolutely love what you shared about slivers of light, and the way you make the profound so accessible.
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Slivers of light are what’s possible, I think. It is as if they are the ribbon around the moment, dark though it may seem. Why not open the gift? Thank you for your kind words, August; they always mean so much.
Karen
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I was touched by your life challenges. I have found some relief from pain and discovered some wellness support in essential oils. I would be honored to share some with for you so that you might try them to see if they prove helpful to you. Please contact me if you are interested .
Sincerely,
April
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Thank you for stopping by, April. I appreciate the offer of assistance.
Karen
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The older I get the more I see my body as a traveling companion, not my self. I love this familiar old companion and I do my best to take care of her, and I thank her for being my window on this beautiful sensory-rich world, but I understand that impermanence is the essence of the body. The pain as well as the pleasure afforded because I inhabit a mortal body are transitory and precious. Karen, you are a lesson in living appreciatively in each and every moment.
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Our “selves” really are windows on the world, aren’t they? We watch all come and go doing our best to appreciate and absorb. Of course, nothing stays, even us. Keeps me curious for what comes next. 🙂 Thanks, Adrian.
Karen
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Karen, thanks so much for having the courage to write about your condition and your experience. So many of us wonder how we would feel if we were in a similar state, and you are like a war correspondent on the front lines. It is very enlightening to see how your zen and yoga practice help you continue living, and not just living, but discovering the light amidst the darkness. Your line “always there is a sliver of light, and if I am mindful, I will discover it” is incredibly inspiring. Thank you.
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I really appreciate your kind words, Craig. I cannot imagine what form this experience would take without then or yoga in my life. I’m just beginning to work with the sliver of light idea; I’ve discovered it really is there no matter the experience. If nothing else, the degenerative processes keep me curious. 😉 Thanks for all the support you give this blog. Much appreciated.
Karen
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Geez, I’ve been MIA for a long, long time. I’m so sorry you’ve been through so much, with no real healing. Yet I find what you say, and your pictures such an inspiration in my own life! Thank you for that. Good thoughts and prayers that the bone graft takes and that you can feel healing begin. With love my friend! ❤
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Hi, Dona!
I don’t have the sense my neurosurgeon believes the bone graft will take place–autoimmune disease really works against that. That there is no problem with the hardware is good news. And I’ll take it. All the disease processes that are in place are degenerative but I aim for even every day! Thanks for stopping by!
Karen
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“I sail on current seas rather than setting a course for lands lost or for shores beyond my reach.” You might also sail with the current, no energy required; the practice of giving way to it, being blown with the wind that fills the sail. Your writing is so poetic Karen, it encourages others who take time to read it…
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Yes, Tiramit! To sail with the current is what I was looking for but it eluded me. Thank you for that distinction; I edited the post. I appreciate your kind words regarding my writing. As well, I appreciate you taking the time to read my words.
Karen
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Oh my goodness. I feel so badly that you have so much on your plate. And I love that you look for the learning, every darn time, when so many might just complain. Will continue to keep you in my good thoughts and prayers.
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Oh, Kay, I am not without my moments of whining but the work of Pema Chodron has helped me. If memory serves, you also know her work?? If I”sit”with that frustration and just let it have center stage, the moment will pass. As I must be judicious in how I use my energy, whining is a waste. A practical application always helps! 😉 I really appreciate your prayers and good thoughts. Thanks so much.
Karen
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Yes! One of Pema’s books greatly changed my outlook on life. And during a rough patch in my life, I learned what it sounds like you have already learned: energy not spent propelling you forward will only mire you in place and exhaust you. Wishing you Godspeed propulsion:).
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This is so touching and real Karen. I’m grateful you find relief in daily yoga. It truly is a gift when we can attune and listen fully to our body and allow the prana to flow to heal, release and energize as much as it can.
Letting the labels go and living in this state of impermanence cannot be easy.
I admire your spirit and candor in facing what life brings. Keep finding the slivers of light my friend 💛
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As you say, to connect to the life force is to sense the body’s signals. It is much like distinguishing a child’s cries or even the range of a cat’s meow. There is the signal and then there is the context. As an observer, I gain perspective; often, that means responding rather than reacting. And when all else fails, I remind myself that life is impermanent; there is more comfort in that than most would think. 😉 Appreciate your thoughtful words, Val, as always.
Karen
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As always I find inspiration in the bitter-sweet beauty of your words, it is good to hear from you again. I also found your choice of images a beautiful match..
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Thanks for the kind words, Angela and glad you enjoyed the images.
Karen
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Hang in there your words are always inspiring! Love you and God bless!
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Thanks, bro!
❤
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