Trying to put pain into perspective

May 8, 2022

This year marks the 21st anniversary when devastating chronic pain from dystonia took over my life. Within months after my first symptoms, I went from a very active, social, athletic person to a pile of meat on the floor rolling around in pain all day. Dystonia blindsided me, turning my world completely around.

I didn’t have good days or bad days back then, or even parts of days that were okay enough where I could do things around the house or outside the house to run an errand, enjoy a meal with friends, or just go to a movie. I was literally floor or bed ridden and only got up to go to the bathroom or get something to eat, which I often brought back to the floor to eat lying down because being upright for any length of time was excruciating.

The pain from the involuntary muscle spasms and contractions, and my head being locked in a turned position, forced me to give up almost everything from the life I was living. I could barely do the most basic of daily tasks. It was absolutely heartbreaking.

After years of working through the physical and emotional pain and finding numerous things to help me better manage my symptoms which is still a daily requirement for me to be as functional as possible, it is a far cry from the person I was before dystonia, but a far cry from me at my worst, which is how I measure my progress (the list of things I do is too long for this article so please see my website or my two books). I don’t compare myself today to the person I was before dystonia. To me this is unrealistic. I measure my life now to my toughest times to see how far I have come.

I encourage you to do the same because when we look at the past and grieve the old us for too long, it only brings sorrow. I can compare the person I was before dystonia to the person I am now and see how different life is, and easily become sad. There is no point to this because I was crushed with a brutal, life altering health condition, so the only fair measurement, from my perspective, is how far I have come from the devastation of that life change.

The biggest challenge for most of us is learning to emotionally deal with pain. The pain is horrible for sure, but the anxiety, depression, fear, and isolation are in the front seat along for the ride.

The first thing I had to do was come to terms with the fact that life was different. Not that it would always be different, but to be present in the moment and accept that it was different from before. I then had to learn to be present with my pain, rather than run from it or try to mask it. This was such a huge step in my ability to cope, because running from pain, emotional or physical, does not make it go away. It can sometimes make it worse.

Allow yourself to acclimate to all events and situations without resistance. Resistance to anything in life increases its power over us. If we can learn to stop resisting what is, it leads to comfort in uncomfortable situations. We learn to accept what is happening in the moment, without panic, worry, fear, or anger. This then leads to easier acceptance of other life challenges and changes.

The following poem is called The Felt Sense Prayer (anonymous). It describes the many ways we attempt to avoid all sorts of physical and emotional pain. It also highlights how recognizing pain and accepting it can increase self-knowledge and improve self-care.

I am the pain in your head, the knot in your stomach, the unspoken grief in your smile. I’m your high blood pressure, your elevated blood pressure, your fear of challenge, your lack of trust. I’m your hot flashes, your fragile low back, your agitation, and your fatigue.

You tend to disown me, suppress me, ignore me, inflate me, coddle me, condemn me. You usually want me to go away immediately, to disappear, just back into obscurity. More times than not, I’m only the most recent notes of a long symphony, the most evident branches of roots that have been challenged for seasons.

So, I implore you. I am a messenger with good news, as disturbing as I can be at times. I am wanting to guide you back to those tender places in yourself, the place where you can hold yourself with compassion and honesty. I may ask you to alter your diet, get more sleep, exercise regularly, breathe more consciously.

I might encourage you to seek a vaster reality and worry less about the day-to-day fluctuations of life. I may ask you to explore the bonds and the wounds of your relationship. Wherever I lead you, my hope is that you will realize that success will not be measured by my eradication, but by the shift in the internal landscape from which I emerge.

I am your friend, not your enemy. I belong. I have no desire to bring pain and suffering into your life. I’m simply tugging at your sleeve, too long immune to gentle nudges. I desire for you to allow me to speak to you in a way that enlivens your higher instincts for self-care.

My charge is to energize you, to listen to me with the sensitive ear and heart of a mother attending to her precious baby. Your being is so vast, so complex with amazing capacities for self-regulation and healing. Let me be one of the harbingers that lead you to the mysterious core of your being, where insight and wisdom are naturally available when called upon with a sincere heart.

Edited excerpt from my book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
Click here to get a copy

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers NetworkThe Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.

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8 responses to “Trying to put pain into perspective”

  1. Gloria Pellegrino says:

    Hello Tom and to everyone who share their stories and deep thoughts. Thank you. My journey is quite recent. From hindsight the first symptom i remembered was in 2015. Nothing until 2019 when start having neck pain that comes and go. Spasm, pain kicked in end of 2021. I am learning alot from reading your book back in 2020 and from the cervical dystonia forum, every member contributing and helping others with their personal experience. This article is powerful. It brings out many of the unexpressed, buried feelings while i am busy looking for ways to calm the spasm and pain. “Unrealistically looking for some cure” when there isnt any. I cried and need it to for awhile.

    • Tom Seaman says:

      Hi Gloria- Thanks for all you shared and about the article. I think purging those emotions can be very healing. Keeping them inside can cause for a worsening of symptoms and keep us in the freeze part of the fight/flight/freeze stress mode, which can be so detrimental. I hope you continue to dig deep and let things go, and if I can ever help with that, please let me know.

  2. Hilary Bamberger says:

    Tom, I wonder if we all go through a bereavement for the person we were and the life we expected to live. I know I did, I went in and out of the 7 stages of bereavement and also got stuck in the middle of it. It took me about a year and a half to come to terms with what was happening and to accept my life had changed but also that I could have some control over it. For the past 6 years, I’ve been able to accept each day as it presents itself, to not be angry or despondent. It certainly helps to learn to accept the diagnosis but not to give up. Now I hold my plans lightly, I’ve learned to say no to events that I now will damage me and to surround myself with caring and considerate people. I’ve let go of some people and, sadly, others have walked away. The ones who remain give me strength to start each day with hope. You’ve expressed so well how best to manage ourselves if we are to live well with this new life. Thank you as always

    • Tom Seaman says:

      Hi Hilary- That is a really good question and my guess would be probably yes, we all go through a bereavement process to varying degrees. And it may not always be for a health condition, but to be more specific to the topic of the article, it is common when a health condition changes our lives. I think we all have a different capacity and set of tools for resilience and viewing things in ways where the condition will or will not take us down. That all aside, I think your comments about letting go and accepting each day as it presents itself is the key to not living in a sad and depressed world. But I think it takes a lot of lows and then hopeful moments and also complete exhaustion at times of trying to resist what we don’t like and then realizing that our resistance is making us worse, in order for us to stop fighting so much and let life be what it is and flow with it rather than try to change the flow or control the flow of life.

  3. Jeff Williams says:

    Hello Tom, Thanks for the perspective.I have had cervical dystonia for around 30 years.I have been through so much it would be a book.Every day I wake up and say just make it thru this day and have recently been depressed thinking,each day I make it through is one day less of my life and start thinking of the past and how I will never be able to be that person.

    • Tom Seaman says:

      Thanks for sharing Jeff. I can very much appreciate what you mean about making it through the day. And I think that it is important that acknowledge ourselves for doing that and to also try and let the old us and embrace who we are now and live it to the best of our ability. Here is a link to an article on this topic you might like – https://www.tomseamancoaching.com/embrace-the-suck-of-life/

  4. Ruth Gruhn says:

    This is INCREDIBLY POWERFUL, Tom! Thank you for sharing!!

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