There are roller coaster lives–the downward rush, the upward crawl–as energy and inertia swirl present into past. Life-changing events slow the roller coaster, sometimes to a stop. These are the moments of sifting through the life experience.
Of late, I have been in such a pause, taking a long sit in my past. I decided I do not want to repeat the familiar upward crawl or the rush to a bottom I know too well. I want off the roller coaster. To do so, I return to the moment I decided to ride.
It is a warm, August night in Colorado at Red Rocks, 1976. The naturally occurring amphitheatre provides perfect acoustics. At over 6,400 feet, the stars seem close enough to touch.
On stage, Judy Collins is singing the Ian Tyson ballad, “Someday Soon.” It is a song of a doomed relationship: a young girl loves a cowboy who loves the rodeo more. She is “going with him,” anyway.
I am 24, and what I hear in “Someday Soon” has nothing to do with loving cowboys or rodeos. Someday soon means the risk is worth it, no matter the odds.
I was euphoric, confident in the new life I was about to begin. I am not sure just when I reached for the stars. I only know they were in my eyes.
What felt like endless possibility, however, was only one moment at the top of the roller coaster. It is not always easy to recognize the ride is downward. Not in the early years of chronic illness. It is easier to believe in someday soon.
I ride the roller coaster for nearly 40 years, until 2015. In July, I weary of chasing someday soon. I develop myelopathy—quadriplegia is a possibility–in addition to autoimmune disease.
Successful surgery sweeps me up in the energy and inertia of the ride. So much seems possible as the cervical fusion actually begins to take. As unexpected as that is, there is more good news. The inflammation from autoimmune disease is helping my vertebrae heal.
Inflammation is vital to healing bones. It is the body’s way of dealing with intrusions although my immune system is so exuberant it attacks itself.
Framed within a healing mindset, autoimmune disease does not seem a downward ride. But pain reminds me it is. The stars in my eyes stay until October. It is my last roller coaster ride. Risk has lost its appeal as has the idealism of that night in 1976 and “Someday Soon.”
I hold the memory close for it is a night when a lifetime began. After nearly four decades of roller coaster days, each high and low is invaluable. They are the experiences that make me who I am now.
And that is where I begin, not starry-eyed but focused on the middle ground, accepting what is: framing the pain of autoimmune disease within a healing mindset that includes medication.
There are no good choices but some are less toxic than others. Immune suppressing drugs will affect—maybe even stop—the healing in my neck. Same is true for steroids. In fact, my healing is possible because I am not—nor ever have been—on immune suppressants. Rarely, have I taken a course of steroids.
So, I decide on the drug, Gabapentin. No odds given or promises made but there were none with my spinal cord surgery, either. There is the comfort of impermanence–nothing and no one stays the same.
Oh, I still look to the stars with wonder but I have no desire to reach for them. I am content to explore impermanence. I aim for even.
On this blog, I have written more about chronic illness than I ever intended. Perhaps publishing weekly posts increased my awareness of its presence. 🙂
I will post as regularly as I am able. Everything is taking a bit longer these days but then, I am making a lot of changes. Some I will share here. And the medication seems to cloud my thought process. Writing just takes a lot longer.
As always, I read your comments—I enjoy our exchange—I will respond. And I have missed reading blogs. That, too, will resume. Thank you for reading this blog.
KM Huber's Blog 
Ack! Karen, oh my goodness. Life has really sent you a curve. With everything going on in my life, I had not realized you had spinal surgery. Oh boy, do I know about that. Hubby was on Gabapentin for a while until he had his spinal surgery. Then they had him stop taking it. Something about it disrupts bone growth. Anyway, so glad you posted your progress. Even though, it may not be the progress you had hoped to report. Illness and recovery is such a difficult process to navigate through. I admire your strength and fortitude girl to keep a forward movement. ((Hugs))
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I do think that the gabapentin is helping my neuropathy. No one mentioned the issue with bone growth but I understand what you’re saying. For me, the concern was how long I could last without any steroids or immunosuppressants; the neurosurgeon told me to stick it out as long as I could, and I did for most of the six months before I started on a regular, low dose of steroids.
This Friday I see the neurosurgeon, and we will hope that the bone growth continues. There was no choice with the surgery– without it I would be a quadriplegic–and there is no guarantee of how much sensation I’ll recover as the spinal cord attempts to heal. As you say, it’s a bit of a curve but I am managing. The steroids are providing me a quality-of-life I have not had for some time. They, too, our choice. Thanks for all the good thoughts and support. It means a lot.
Karen
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Thank you so much, Karen. I suspect writing has indeed helped you on your journey, and helped you to reframe the chronic illness, accept what is, etc. Thank you so much for including us–most of us strangers–on this intimate and highly conscious ride. I look forward to whatever you post–whenever you do so.
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Thank you, Ann. So many times I have found solace, curiosity, and energy in your posts. I’ve been meaning to tell you that. And now I have.
As well, yours and so many of the comments here have helped me frame and re-frame this illness. The patience of this group has given me patience. I’m not sure that chronic illness ever fits within one frame for very long. You all have have always come along for the ride.
I hope to return to a more regular posting schedule but for right now, I am content to live a routine of no routine and aim for the even of the day I have. It is harder than I thought; I know you know that. 😉
Karen
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Why, thank you! I appreciate it.
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I’ve missed you. Now I understand why. I wish you well on your journey, wherever it may lead. Know you are thought of here in northern Vermont, where it is snowing today.
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Thanks, Janet! I appreciate your good thoughts. I’m always glad when our paths cross.
Karen
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Hi Karen – this is such a poignant and wonderful post – you capture so much about the truth of the human journey! I feel for you. Immune system issues are a difficult path, one we never choose – or anticipate. I am too familiar myself with the rollercoasters it brings, along with the helplessness of the medical profession at times to diagnose the issue or understand how all is integrated as a system. On my own experience the first thing doctors do is ‘psychologise’ the problem as a device for blaming the patient. I do hope all goes as well as possible for you. We have a phrase in New Zealand to give hope in these moments: Kia kaha (‘ever be strong’). All best wishes – Matthew.
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Yes, Matthew, that “psychologise” is prevalent here as well. In fact, it is at the core of why I avoided the medical profession for the last five years. As a reader of this blog, you know my successes and failures in that.
So far (and yes I am quite guarded as I say this), it seems I have a team of physicians willing to work with me, in particular what we call a primary care physician. That physician sends me to specialists as necessary, essentially. She is quite mindful in her approach to autoimmune disease having said more than once that my approach of diet and lifestyle is “exactly what I need to be doing to reduce inflammation of lupus/Sjogren’s. Until the spinal cord issues of myelopathy, ataxia, and hyperreflexia, I was doing fairly well; I just did not see the degenerative disc disease sneaking up on me. You know the rest.
So, for the present I am working with the medical profession but I have not abandoned the diet and lifestyle, including meditation and yoga. In particular, yoga meant I did not need physical therapy; this still amazes my neurosurgeon and neurologist. Your mom would have agreed and not been amazed at, I suspect. 😉
Thank you for your many thoughtful comments. Many, I reread often. Thank you, Matthew.
Karen
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Thank you for sharing your journey Karen. The photos add brightness and clarity to your touching words.
💛
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Thanks for mentioning the photos, Val. Right now, it is quite difficult for me to take photos, and I miss it. I am determined to take more pictures that are in focus than out. So far, I’m still “experimenting.” Thanks for all the support, Val.
Karen
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Experimenting with curiosity and kindness is a good way to go Karen. Gentle hugs xo
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I read your post several days ago and still find myself without words to show my appreciation for how you capture so beautifully that journey we all are on. Thank you for sharing and continuing to write — and for teaching us with images and words.
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Oh, Beth. Such thoughtful, kind words. Thank you. How grateful I am that you and I walk together from time to time. I am always richer for that experience.
Karen
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I love this post and getting a glimpse of your 24-year-old self. I will be thinking of you. Enjoy each moment. No rush.
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Thanks, Cynthia. As you can see, it has taken me a while to respond. Again, let me thank you for your “one true thing” year of posts. I really am going to try something similar with the daily aim. Thanks for the inspiration.
Karen
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I look forward to it, Karen!
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whether you walk
or roll
the good red road,
you’re always on the way. ❤
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Hello, Meredith. Lovely, just lovely. Thank you. ❤
Karen
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Gabapentin is the med I’m taking for PHN it convinces the mind there is no pain. Curious sensation where you know the pain is there but can’t feel it so much. I have it on the right side of the head. Now I’m going to listen to your song and hope this message helps you share the weight a little…
T
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Your messages always share the weight, Tiramit. Thank you for that. You and I have discussed gabapentin and are in agreement that the mind believes there is no pain. Right now, I’m doing a lot of work with the idea of mindset–I am working on a manuscript with the working title of Aim for Even– and I keep remembering a phrase I believe you used regarding pain: something to the effect of gabapentin building a wall around it. The pain is there, as you say, but it does not seem to have such a ragged, raw quality. What does that mean for mindset? Is it something useful? I do not know but I am exploring it. Thanks, Tiramit.
Karen
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I am moved by your honest and brave account of the whipsaws of your life. And that song is really an emotional reminder of how wild and glorious this risky and dangerous adventure is. When you said “each high and low is invaluable,” in spite of the price you pay, it inspires me.
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Whipsaw is a wonderful word, Craig! Thank you for that!
“Someday Soon” is a wonderful song; one that is always welcome.It has taken me decades to appreciate the value of highs and lows. Each has its place in the tapestry of my life. The price is the final stitch. In understanding that, I now aim for even, much more comfortable in the middle for it allows me to be open to either end of the spectrum. 😉
Karen
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may someday soons
be in grace,
supported
by love 🙂
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Again, such graceful reflections you offer. I return frequently for strength, for peace. In your words, I always find a response. 🙂
Karen
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This is one of your most touching posts. Whenever you post I’ll be right there. So few people could show the courage and humility you do in the face of illness.
I love that song too–but you are right, that is a song for a young woman on her way up, all her fires burning. The second act of life is harder to navigate, but you are doing it with grace.
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And Adrian, you have brightened so many days. I look forward to all the days you and I are yet to share. In those moments, the world is a softer place where all are healthy and all are equal. Thanks for being such a great pal, Adrian.
Karen
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