Monday, March 31, 2014

One year plus one day since...

...I have posted here on my blog. It seems uncanny that the very day I decide to return to my blog and make an effort to remain consistent with it, I find that my last post here was exactly one year plus one day ago.

I think I'm finally finding my new voice.

Some of my readers may remember my old voice, the voice of a long-time horse-breaker and confident ranch wife. The proud mother of a ranch kid and gifted pilot and a teacher of my son's homeschool program. A singer with a little trio of strong women who played and sang bluegrass gospel; and a Cowboy Poet, one who had seen much of the genre as it began, grew and flourished. One who presented her poetry often, sensing that her value lay in her authenticity as a cowboy who drew cowboy wages and who, well, loved every minute of it.

This year, April 9, 2014 will mark the tenth anniversary since much of the voice which gave me confidence and comfort became lost to me. Over those years, I also experienced, in powerful emotions, the loss of my identity as day after day became week upon week, months and years until now, a decade.

It seems amazing to me that so many years have passed since my life suddenly changed in ways I had no way of conceiving. Where did that decade go? Ten years ago, I was a strong, tanned, thin and active, young 52 years old. Today, I am 62, and, on a good day, I feel as though I am 80. My abilities have changed dramatically. Something unexpected in life happened to me, and thus, I became unable to do most of the things that had been of utmost importance to me.

Over the years, this blog became a friend to me; it afforded me a way to put words to the battles I was waging, the changes I had no control over, and the challenges I have had with accepting my new life. Although a full year has flown by since visiting here, I still thought of this blog many times and was always blessed with the confidence that the things I experienced during my ongoing "recovery" had been documented and remained.

A new voice remains. And I'm anxious to try it out.  


Global Gal said...

Stumbled onto your blog today and I'm completely shocked by the similarities of our stories. Your writings about pain, loss of identity and the daily struggle just to cope - all resonate clearly with me.

I experienced 4 fractures of C1 on 2/28/01. Mine is an epic (which I will not go into here) - it happened in a rural area of Burma (one of the poorest countries in the world). I knew that I could not risk my life in a Burmese hospital, so I self-evacuated to Singapore. It took me 12 days to get to a Singaporean know how excruciating and impossibly difficult that was. Like you I was transferred by ambulance to a 2nd hospital (the 1st was unsure what to do with me.)

Fast forward 13 years - my life is very difficult. I haven't worked in 6 years (I loved my job as a teacher but simply cannot do it anymore). I was a very active, strong, grounded, centered, healthy, fearless, world traveler with an incredible life - which all changed in the blink of an eye. I was a very healthy 39 year old woman when I got injured, now at almost 52, I feel 80. I barely know or recognize myself. Pain has left it's mark on me. I am deeply grateful that I experienced the miracle of being protected from paralysis and death, but it's a struggle to live in this body now.

May you be free of pain and suffering.

By His Grace said...

Hi, Global Gal!! Your note here means much to me. I don't want to say that I'm thrilled you found me, because I am certainly NOT thrilled that you, too, suffered a 4 place Jefferson Fracture and still suffer endless and overpowering pain! But, I have a feeling that you and I share many symptoms and have many situations in common with each other, and that because of that, you will understand when I write that it IS thrilling to find someone who can help me to understand things, and whom I perhaps can help to continue to survive a condition (Central Pain Syndrome; Post Concussion Syndrome; even the Jefferson Fracture itself) about which so little is known.

I am so sorry that after 13 years, your symptoms remain. I can imagine that you, like me, must deal with friends and family members who cannot understand nor comprehend what we are going through on a daily basis; they judge OUR pain and symptoms by the symptoms THEY themselves have experienced, which is all they can do. But, my prayer is, they will never know what Central Pain firsthand!

I am hoping we can get to know each other better; I'm very interested to hear your story. Are you like me? Do you feel the need to share your story? I hope that you will be able to tell that story to me, whether it be in a private email, or here on my blog.

Thank you! I know it takes a lot of courage to post on the internet, to someone you do not know. I hope we can become e-friends.


By His Grace said...

hi again, Global Gal,

If you would rather visit with me in private, please email me at:
virginia bennett @ em barq mail .com
Remove all spaces when you enter my email addy in your "TO" box!
Thanks, and I hope to hear from you!

Anonymous said...

Hello dear friend,

It's good to hear you are still fighting and overcoming - even when there are no more medical "wizards" left for us to visit.

I'm in that same boat and it's a boat without hope for future days without pain. It's a boat where no one else "in real life" gets it.

But thanks to the internet there ARE people who understand the 24/7/365 battle to do life in spite of pain, and to do that battle with faith in our Lord.

One nice thing is to no longer face any more medical decisions or surgical bills! Medicines no longer help me at all so I'm off everything. I'm soooo grateful that it appears they do some little thing to make your days more doable.

You've worked hard. Somehow find a way to enjoy these new days of very, very little physical work. Get good at taking it easy and relaxing. Then teach me how to relish not working hard at stuff folks can SEE!!

Thanks for your update. An annual update is way better than I do. I've wanted to blog for the last 23 years and never did it.

Lisa in Alaska

Susan Spitzer, PhD said...

Ditto for me...except I am a little younger than has been 10 years since I was a college professor and moving full force through life. I thank God daily for the lessons She has bestowed upon me when He got my ear through illness. Thanks for your story!

By His Grace said...

Hi Lisa! Sorry, I am just now seeing your post here!! Thank you for your message. It's not fun to hear that you are still plagued with so many symptoms that probably no longer seem like symptoms of a foreign condition, but a way of life for you and a part of who you are. You are my hero! Your tenacity in the face of adversity challenges me to keep going, when I see you still puttin' one foot in front of the other! God bless you and let's stay in touch! If you need my email address, just let me know. With love, Virginia

By His Grace said...

Dr. Spitzer, thank you for your message, as well. I am always interested in the cause of a Jefferson Fracture...what happened with you? Your 5 word phrase was perfectly stated: "moving full force through life!" I just had the thought, just now, that JF's do seem to happen to the most active, vibrant people due to the nature of the fractures. We are often sports people, or suffer this due to vehicular injuries. We were out living life to the hilt when the brakes were slammed on (in my case, literally) and we each saw a sudden, 180 degree change in our lives and our plans for life. Thank you for writing and I hope you keep in touch! I am also on facebook (Virginia Bennett) and since there are many gals with the same name, mine is the one with horsey photos! gentle hugs to all of those are dealing with this and have chosen to post. If you would like to share your story, I would LOVE to read it!! gentle hugs!

Alan Brady said...

Man's greatest achievement? Perhaps not, but can you afford not to read on when I am about to tell you about jefferson long term care? Many an afternoon has been enjoyed by a family, bonding over the discussion of jefferson long term care. Indispensable to homosapians today, jefferson long term care is not given the credit if deserves for inspiring many of the worlds famous painters.

Anonymous said...

It will be 2 years tomorrow since my injury. I know I'm still early in this stage of the game I am coming to notice that the pain just won't go away no matter what you do (or don't do).
I too was very active, and now no longer can do ANY of the activities I used to do. Work is becoming more and more difficult. There are times when I truly feel hopeless.
Thank you for sharing your experiences. I guess I'm getting a glimps of the future by reading these.

By His Grace said...

Hi Anonymous! I'm so sorry to hear you are suffering so much with the residual nerve damage you received to your central nervous system via the trauma to your C1 (possibly other structures at the skull base, too, but I hope not! They found "atlanto-occipital dislocation" in me 3 yrs post injury date)! I am praying your system will quiet down and you will feel less pain as some more time and healing passes. How did you received your Jefferson Fracture? I found out early on that those of us with Central Pain Syndrome cannot withstand exercise or much physical activity. Any movement at all riles up the damage to the brain or spinal cord and we end up in bed for a few days as payback. I hate to sound like I'm painting your situation so bleakly...but it is the way this condition is. The hardest part was dealing with the doctors and neurosurgeons who should know more about CPS but they don't and they made me feel like they thought I was lazy, malingering or making it all up for attention. The only good thing is the JF is a severe-enough trauma that docs know it is serious...sometimes, they don't want to work on someone with a JF, so they make it sound like we are all fine, when we are not! Once in awhile, we find a good neurosurgeon who will respect us and treat us right!

Did you have surgery post injury? Do you have a good doctor now?

I hope you keep in touch, I'd love to help in any way I can, or just listen. It does seem as though it's us active people who end up with JF's because we are the ones riding horses in challenging situations; diving into water...other sports activities.

God bless you and I'll be praying for you. I know how hard it is to go thru what you are going thru. I know that work is usually such a stimulus for further pain! It's very hard for anyone else to really "get it."


Kathleen Sturm said...

2 days shy of 2 years of my unstable C2 fracture. Not sure why I decided to Google C2 fractures, but I am glad I did. I feel that for the first time- I see I am not crazy and there are other people who have recurring issues. I have HORRIBLE nausea, constant vertigo, chronic fatigue and anxiety/palpitations. Not sure what I should do- I keep thinking I will shake this off- I think I need to see my MD again. I'll have to spend more time going thru your archives what I have read so far encourages me to do more research. Thank you for this Blog- Certainly, I was guided to find your site!

Anonymous said...


It's been 2 years since you posted.
I would like to think that this represents wellness that has translated into a fuller offline life.

Peace be with you,friend. I hope you are well.

Lurker Mom (I used to message with you from time to time about my son's cranial settling and EDS)

By His Grace said...

Hi there, Lurker Mom!!! Please let me know how your son is doing! I have often wondered. How old is he now? And let me know how you are doing, too. If you are on facebook, you can PM me there (look for Virginia Bennett in Goldendale, WA) and if that doesn't work, let me know and I'll get my email addy to you.

I'm afraid my condition has, in ways, worsened. My skull base surgery at OHSU in Portland in 2012 still seems to be a great success. I have little pain in that area and do have restricted range of motion but that is nothing compared to the benefits of being made stable between my spine and skull after 8 years of going around with a broken neck. But, the damage to my Central Nervous system was already done and thus I still endure Central Pain and weakness every day, some days worse than others. Today, I am laying low after going to town yesterday and walking through Goodwill. I guess if one goes out and has a bang-up time out on the town, she must not complain if she is required to pay the fiddler. :-)

I am now 64 (my injury occurred when I was 52)and maybe it's my getting older that has combined with the CPS to slow me down a great deal. However, I enjoy my simple life at our homey place in the foothills of the east Cascade Mountains with my husband and our two dogs and getting out to care for our yard and flowers on my good days.

How sweet of you to check in with me and I hope i get to hear more about how you and your son are doing. My friends who have EDS have taught me that that condition affects the whole body and is a tough battle to wage and having the right care and the right doctor makes a huge difference. I'm so sorry for his having to deal with this!

big hugs,

By His Grace said...

Kathleen Sturm, I am so sorry I have not replied to your post here! It has been over a year since you posted and I'm aghast that I have been so rude as not to reply, even tho I did read your message at the time you posted it. Now, you are 3 years since your injury. How are you doing? Have any or all of those horrible symptoms you were dealing with a year ago abated or gone away? That is my prayer for you, for certain! You've experienced such a life changing injury and we go through a lot of emotional battles as we realize that our injuries were not something that we just had to get over and then get on with our old lives! I hope you are feeling better and stronger and no longer dealing with as much nausea and weakness and pain! If you see this, please drop a comment and let me know.

Thanks so much for stopping to read and for writing to me!