I wrote this post on March 4th of this year. Just after I wrote it my computer crashed and died. The following month I had surgery to implant an Spinal Chord Stimulator for my arms. That went really well! I replaced my computer and then I got an amazing opportunity about 11 weeks ago. I had the new DRG stimulator from St. Jude’s installed and things are going very well. I will soon put together a post explaining the whole process with links to videos and contacts for those interested. The bottom line is this may well be the biggest breakthrough in the history of this illness. There truly is hope and I look forward to sharing the whole story with you soon. The video above is me introducing myself, discussing a little of what this blog post is about and sharing my new song. Meanwhile until I’m able to get the post ready regarding the DRG I’m finally posting the article I wrote back in March. Hope you enjoy!
Today I had my monthly medication appointment with my doctor’s office. I am so blessed I live in Boulder county where they have a wonderful volunteer service, Boulder County Care Connect, that helps me get to my out of town appointments. The driver was someone I’d ridden with before and we were having a nice chat all the way there and back. He shared something “negative” that had happened to him first thing this morning. He was looking to hear what I thought of it and how I might put my own spin on his moment. It was a moment for him where he was having a negative experience. However from his mood I could tell he didn’t let it ruin his day … it was just a moment. That got me to thinking about how intense some moments can be for those of us dealing with CRPS.
While at the doctor I had to fill out a form that asks a lot of questions about my current and recent pain levels. There is a sheet that’s always attached that lists the numbers 0 – 10 and explains what each number means. For example if my pain is an 8 out of 10 that means it’s utterly horrible. This level of pain is compared to child birth and severe migraines. Often a person living most of their time at an 8 will become depressed or suicidal. A 10 on the pain scale means the pain is unspeakable or more than you can imagine. With CRPS the patient will sometimes experience a moment of pain that is a 10 on that scale. That’s usually when we pass out from the pain and I’ve definitely been there a time or two. The McGill Pain Index considers the level of pain caused by this illness to be considerably worse than chronic back pain, having a digit severed, unprepared childbirth or non terminal cancer. At these high levels of pain my rational mind doesn’t work well, or at all sometimes. My logic is shot, reason is out the window and I easily become desperate for pain relief from this place. But since my logic isn’t working finding that relief can be a real challenge. As I’ve mentioned I have a tool box full of tools I can use in any given moment. However at this level of pain many of those tools stop working. Sometimes it seems they all stop working for a moment. When my tools stop working it can sometimes leave me grasping at straws for a solution.
So what do I do when I’m in this place? I love myself through it any way I can. Sometimes that means totally giving up and surrendering to the moment. I recognize nothing is working right now and I stop trying to fix it. I do whatever I can to find my way to acceptance. I do whatever I can and tell myself whatever I need to hear to find peace with the moment. That could mean I become an expert for a few days at distracting myself from the pain. For me if I can play my guitar that will work almost every time. But at this level of pain often I am unable play the guitar and if I do it’s not for more than a few minutes. This is a great time to ask for help. I start by asking my spirit to align me with the help I need. Word for word I might cuss a little and say with fierce meaning, I NEED HELP! Or maybe, “Please dear soul help me love myself through this, help me find a way to deal with this moment. It feels like more than I can bear.” The next and very important step is I find ways of distracting my mind. Given the opportunity my mind will spin for solutions. From this place of desperation I’ve learned I don’t always choose gentle solutions. Maybe with a good movie or TV show I can distract my mind and allow the emotion of the moment to pass. If I’m unable to play my guitar maybe I can at least sing along with one of my CDs. Sometimes having a conversation with someone I love can help. Other times I feel not to share that level of pain with anyone and I feel I cannot reach out. In a moment like that I wonder what someone else can do for me anyway. I don’t want pity and anyone who loves me will feel bad if they know I am in this much pain. If there is really nothing they can do for me I prefer to not share that with them. It may seem silly but it doesn’t feel fair to share that with them sometimes. It is important I can tell the difference between the moments I can love myself through and a moment I might want to reach out or call someone and at least say crap this sucks! The emotion that comes from feeling helpless can be completely overwhelming. I‘ve learned to love myself through that feeling of despair. If I need to take action or find a solution it‘s best done when I‘m not feeling desperate. If a distraction doesn’t work I take a nap if I can. Medication, breathing exercises, meditation, etc. There are times there is no way I could focus on meditating but just soft music in the background can calm my nerves. A bath can be really helpful sometimes even relaxing me enough I can get some rest. Rest or sleep for any length of time can make such a huge difference. Anything I can do that is loving to get through what seems unbearable is a good choice. I remind myself if I’m breathing I must be able to bear what is happening. While I’m waiting for help to arrive it’s up to me to love myself through whatever I’m feeling in the moment. What’s important and helps me really get through is when I can remind myself how temporary that moment of pain or emotion can be. I know when the pain levels are high it is easy to feel all the painful moments just run into each other becoming one never ending moment of pain. But when I take a deep breath I know the feeling of desperation and overwhelming emotion will pass. Sometimes actually taking a deep breath takes a little while. But I intend myself that direction and somehow I end up there. Sooner or later the unbearable moment will pass. The more I can feel what is happening is temporary the more I can accept the moment I’m in. Equally true: just because I’m having this moment does not mean it will continue. Yes some moments seem to last a really long time. For example it took six years to heal the open wounds on my feet. But they did heal! Six years is a long time and more than once I was sure that was how I would die. I did not die. Came close once or twice but I’m still here and the wounds healed more than six years ago now. Back then it seemed like I’d had the wounds forever and I would never know my feet without them again. Now when I look back it feels like a moment. I keep reminding myself this is temporary then off to my loving distraction. Any distraction that is helpful or loving works. Sometimes the moment last for days and I keep loving myself, keep distracting and keep reminding myself this will pass. What does not serve me is to get lost in my mind trying to figure out how to make this stop or how to make it go away. My experience has shown me that when I try and “fix” the situation from a pain level of 8 or above it is actually just a waste of my time and will likely end in frustration, possibly even landing me in a place I feel worse than I did before. Again my logic doesn’t work here so my answers are not very integrated from this place of great pain. No matter what my desperate mind may tell me to do in a blinding moment of pain I am still in charge. If I pass out the moment will pass as well. Even if this pain kills me and it probably won’t the moment passes and my spirit is free. No matter what this seemingly unbearable moment of pain is a temporary place! I take another deep breath and I remember help is on the way. No matter how long it takes to get here it is coming and it’s on the way. The moment I asked help was on the way. By asking for help I also create a path for the solution or way for relief to find me where I am. Even when I can’t reach out once I ask for help that help will find me it is only a matter of time. Now I go to loving myself through whatever I’m feeling. In truth when I am remembering the moment is temporary I’m usually ok. It’s when it hurts so bad and I start spinning with the pain in my mind that the moment seems permanent and then I’m really screwed because I can’t find my way out when I believe it won’t ever shift. So interesting how that Law of Attraction works. My beliefs can truly shape my reality! I prefer to believe all those moments of pain are temporary and fleeting. I also prefer to believe the moment of love and joy are only a breath away and really awful moments of pain can be followed up by incredible moments of joy.
There are some pain cycles that require a constant “loving myself through it,” as well as maintaining the consciousness that all the moments are temporary. Remember even the ones that run together will eventually shift. After 10 years in the wheel chair, it all felt very permanent. But I got back on my feet, I’m walking today, even dancing on occasion! Sooner or later if I can love myself through the other moments a moment of relief will come. A solution that will help to gentle up my experience will find its way to me every single time!! It is up to me to remember this and continually remind the part of me that is in so much pain. When the relief or the solution shows up now is a wonderful time for gratitude and I say to my heart and soul, “More of this!! Yes more of this please!”
I love to remember there is always a part of me that is not damaged by this experience. There is a spark of the divine that does not get lost in my pain. I can always choose to connect with that part of myself. It may not be immediate every single time but my intention to make that connection will always lead me there. I just have to be willing to love myself until I can feel that part of myself. If you’re reading this I’d like to encourage you to love yourself through whatever pain you are facing today. If you can, remember it’s only a moment, not your whole life. There is so much more here for us than just the pain. Early in self-love I created a “House of Love,” deep within my heart a very sacred space just for me and my soul. In this space of love I breathe that undamaged part of me in. I breathe in the love that I am. I have a shelf of love in the house of love. I put everything on that shelf that is bothering me. This shelf is a place where all of my concerns can rest in the love of my spirit until a solution or resolution presents itself. What I notice is when I put something on the shelf either it disappears because when the moment is over the problem is gone or it sits in love and waits for the perfect moment to present a solution to me. If my mind is really hooked on whatever I’m placing on the shelf I use the distraction process. If it is a long term issue like CRPS or something else that may take a minute to resolve then whenever the issue surfaces in my mind I imagine that issue fell off the shelf. I pick it up and place it back on the shelf to be loved some more until I’m ready to deal with it. I may have to place it on the shelf many times before it feels resolved. But all energy seeks resolution and the moment I ask to resolve an issue the whole universe wants to answer. If I’ll listen to my heart it will guide directly to the answer I seek. Loving myself is the best way to clear the communication channel between me and my heart and soul. There is nothing more for me to do but take my pain to The House Of Love. I lay down on cotton candy, rainbow clouds and just breathe the love that I am in. I breathe, allowing that love to comfort me and ease my pain. Sometimes the “House of Love Visualization Exercise” can be so powerful for me. It can seem at times as if the pain has become us so to speak but that feeling too is temporary. I am not my pain, it is only part of the experience I‘m having. I remember I am so much more than this pain! It also helps to have compassion for myself. Whatever emotion surfaces from the pain is also temporary. Loving me will always allow any emotion to shift!
One more thing I’d like to share before I go, when I take time to honor myself for my courage and to honor the pain itself. Often just that alone will gentle up the moment considerably. For whatever reason my soul, the universe, source or whatever has brought this moment to me. I believe spirit or life gives me the experience for the element of love and wisdom it will create. That is what my soul takes with me when I leave this place. It is truly the only thing I believe matters! It is the love we experience here that makes this life so very precious! Sometimes a moment comes just so I can learn to love myself more. Always this brings me closer to me and as I love myself it brings me more into trust with life and what life is offering and allows me to share my love with the world. I also believe there is deep honor for me from spirit for having the experience whether I do it gracefully or not. But taking a moment to honor me for my willingness to have the experience, then a moment to honor the pain for the wisdom it brings to me as well can totally shift the way I feel. It can even shift the pain sometimes and always at least it shifts my perspective of the pain and that changes everything. When I honor myself in this way I am able to get out of resistance and back into a place of allowing. Everything in my life has purpose. Every single thing that is here is serving me in some way or it would not be here. I know that is hard to swallow when you are in a moment of horrible pain. But I can choose to hate this pain and whatever allowed it and that will get me absolutely the opposite result of what I’m looking for. That type of focus will intensify the pain and make me even more miserable. What I want is relief in my moment of great pain. What I want are tools to help me keep from getting into this much pain. That is so much more important than whatever silly details my mind wants to attach to what’s happening. Everything that comes to me serves me including the pain. When I can allow what is today I am able to find a gentler way tomorrow. Fighting against it is like trying to swim upstream or walk across the bottom of the ocean floor. In truth as I continue loving myself instead of being on the bottom of the ocean, drudging through the sand it feels more like I am flowing with the river. I keep loving me no matter what and it just continues to get gentler as I go!
From open wounds and the wheel chair to healed wounds, walking, dancing and loving life! I’ve even had a successful trial of the stimulator on my arms recently! Years ago the stimulator failed on my legs but this trial made it possible for me to play my guitar every day! Talk about gentler!! I’m scheduled to have it implanted this next week. I believe that “Gentler As I Go” will just continue to be true as I love myself more each day!
I just put up the new YouTube video above where I introduce myself and chat for 10 minutes about temporary moments before I sing “A Moment In Time.” In this video if you’d like to fast forward to the music go to the last six minutes or so of the video. I look forward to sharing all about the DRG stimulator experience as soon as possible. As always I do what I can and trust the rest will work itself out. Hope you enjoy the music!
Thank you so much for taking the time to read this. I wish all of us a gentler day tomorrow with relief, love and joy at the center of our experience! Much love and peace to each of you on your journey!