Living after you Die

Marilyn hasn't written on the blog in quite a long time. Not because she is recovered but she is so busy recovering. I don't write as often. Not because she is recovered but because I am so busy learning how to keep things going in our new life.

That gets exhausting. This week we are taking a break. And the first opportunity that break has allowed is the chance to mourn. Here is what Marilyn told me this morning.
"I realize more and more each day that the person I was is gone. So many people tell me you didn't die and look at how you are getting better. But the Marilyn before all this is gone. No matter what I do I can't get her back. And I miss her."

I miss her too. And that truth - stated by her - has lurked and crept around us in the shadows for the past seven months. Without her uttering those words, we would never cut through the "recovery stuff" - PT, OT, ST, psychotherapy, acupuncture, medications, MRI's, CT scans and face it.

That f**ing accident took so much from us that day - many plans, many dreams. And it ended a life. Sometimes you have to take a break from learning to accept the new and mourn the loss.

I Am

" I am not what happened to me, I am what I choose to become." - Carl Jung

Long Time, No Blog

I realized today that it has been almost a month since we last posted. There are many reasons for this, some good, some bad. No time wasted here on spinning either side of the coin - here is where April 22 finds us. Since our initial foray into the desert we've had two more canyon adventures. This past weekend we camped out again and hiked nearly five miles round trip. Marilyn's walking is becoming more and more solid - a week ago she even walked the entire "beanfield" (in mud and snow) above town. Her cognition and speech becomes clearer and more concise each and every day. I have no doubt that she will not only be able to work as a Nurse Practitioner again, she will be able to excel and increase her knowledge base with the passion she did before. Demonstrated by her success at whipping through online CME's (Continuing Medical Education). In the weeks since our first return to Craig hospital, which also coincided with her 37th birthday her progress has been solid and strong. Not coincidentally, she started acupuncture again and in my observations this has been one of Marilyn's most important and effective treatments throughout her recovery.

Last week we returned to Denver for an eye follow-up and some testing and follow-up with the neurologist who followed her from very early on in her injury. All positive news with her eyes slowly getting better, though double vision still plagues her and her neurological recovery continuing strongly. However, we've realized that these trips are very cathartic for us both. Not only do they mark progress, they lead us to confront the depth and gravity of what has happened. Marilyn's path to recovery, though always positive in prognosis, has been shrouded by clouds that only clear with time. Each visit has pushed the clouds back a bit more and we learn more about what to ultimately expect when all this is "over". It's far from all good.

Note the quotes - it's never over. And that is some heavy shit to assimilate. In aid of that, our personal spiritual quests and need to draw on pure faith has become an integral part of this process.

For both of us, another corner has been reached. The transition from patient to post-recovery. Returning to work, leaving therapy behind. Not being stamped as the girl who had the horrible accident. Me not being stamped as the partner of.... And to a degree, it is happening. I'm looking forward to the day when we strike up a conversation with someone who has no idea this happened. Sympathetic looks, while well intentioned sometimes only salt the wound. The inevitable double edged sword. Incredible community support means that few in the community don't know about this. And let's face it. This blog is the most public of forums. But if this can be a tool for people who might have to or are facing this type of situation, then it is worth it. If this can be a tool for others to better discover their inner paths, I'm glad. If all it did was keep Marilyn's family and friends appraised of her status, thus easing their concern and grief - success!

We're only halfway there. The next six months will be the hardest of all as she exits the support system of therapy and rehabilitation and we try and gain some semblance of our old lives back. The promise of either of our lives getting easier and not having to work as hard once we reached this point, has turned out to be an illusion. So it goes - the ramp steepens and we'll each run twice as fast to keep pace. I say "each" only to underline the fact that we each have very different jobs to do. At least we're doing it together!!

When it's all put into perspective, Marilyn is very, very fortunate (note that I didn't write "lucky") to be where she is today given the extent of her injuries. I'll take that today. But if I had the choice of fast forwarding six months or even better, rewinding six months - I'd take it in an instant.

Healing and Hanging in the Desert...

This Easter weekend we journeyed to the desert for our first camping trip since the accident. We packed up our gear and the dogs and headed out to the edge of Cedar Mesa in SE Utah. Our expectation - and our expectations are few these days - was to hang at camp and take some short strolls across easy slick rock or down a dirt road.

As it happens, a fellow desert rat gifted us with a rough map that depicted a hidden pictograph panel beneath the rim of the mesa. For those of you not familiar with the area, it was once inhabited by ancient peoples, 900-1200 years ago. Among other things, they left behind cliff dwellings, pottery shards and pictographs - drawings on the rock. Appropriately - this panel depicted birthing and Marilyn's hike and scramble to get there was just that - a rebirth of what she used to do and what we were so afraid that she had lost.

A link to that trip is here.
Click 'Start Slideshow' for the full effect with groovy music.

Longer desert treks and mountain peaks can't be far behind...

You can talk to Buddha and listen to his casual reply

If you know me, you know my living in Colorado is no random place, like where I happened to be born, but intentional because of its beauty and my love of the mountains. Gareth grew up here, but it has been his self-found love of these same things, with a greater intensity, that he possesses as a result. I have a level of respect for the mountains that is lost to him in his intensity of love for them (i.e. I couldn't climb or ski the peaks like he does). But I have claimed an intensity of love of the "products" (facial toners, moisturizers and cleansers that are too expensive for me to buy nowadays) which is greater than his, but then again, he is a boy! (Product girls, you know who you are and can relate, now imagine of you woke up with no product, no income and a super-great BOY telling you he will get whatever you need and your 1 oz. facial lotion is only available fifty miles away and costs fifty bucks... try justifying that over the local cheap"Dove" products... product girls, you know what I'm talking about! I hope you don't know but you can imagine the horror!)
So we had a long overdue camp trip to the Southeast Utah dessert over the weekend and it was much -needed by our psyches. We car- camped in the "Westy" and brought our doggies along. I slept great and I did walk with my love Gareth on a hiking trail that went down to the level below us so we could see petroglyphs and I can say for sure that I have not lost my love of hiking or of camping or of the outdoors! Being so immersed in such beauty helps a person forget the terrible things (like my physical challenges, though the trail reminded me) that may be going on around them. My mind finds these things so much more beautiful than I have ever thought and every camp trip I go on will be that much more appreciated as a result. Colorado is where I can be found, thankfully!

Ignorance is Bliss

Well I had a bummer of a day yesterday, which, given what I have been through, seems more like it should be the type of day I have regularly and not as rare as bummer days have been coming. Yesterday's bummer began with intense frustration I was having with the left side. Who knew a person could actually develop dislike and anger at their own leg and arm? I have had hundreds of patients dealing with limb pain and never had one tell me they were pissed off at the affected limb but yesterday saw me being the one who was literally upset at my left leg and arm for being so uncooperative and for not doing what I was asking my them to do. They are still misbehaving but the new day has brought me a reality check that my left leg and arm are part of me and they are slowly in the process of recovery.
My PT in Cortez had to deal with the temper tantrum that I threw at the left side yesterday and pointed out part of my frustration is actually my mental awareness taking hold and that there was a time when my left side was weaker and less coordinated but I didn't get so mad at it because my awareness was so limited that I didn't seem to care like I do now. "Ignorance is bliss" was how he described my mindset and the bliss was what got me through those tougher days at the hospital. Now I have to accept improvements do NOT happen daily like they used to. Recovery is slower and less rewarding now but fortunately the ignorance is gone and mental awareness is improving. I plan on spending some time sharpening my medical brain by hanging out at the clinic I used to work and earn a living at but now I will just be doing some CMEs (Continuing Medial Education unit) and helping when needed, like front office stuff. I think that just hanging out will lead to my ability to return to my job and I will not do that until I feel that I can do a safe and effective job because I refuse to put anyone's life/health at risk.

How is She Doing?

Reading through past posts, I realize that sometimes we don't do a good job of simply stating how Marilyn is doing. So here it is. We are five months out from her injury and by all accounts - medical and therapuetic - she is doing well. The main challenge in our first five weeks home was the lack of expert neurological monitoring. We had to go a bit on faith that she was improving. So on our return to Craig last week, it was great to hear both her nuero docs and the neuropsychologist reiterate that Marilyn was doing very well and would continue to do very well.

Her left side continues to strengthen and become less clumsy. As the snow melts out here in Dolores, we are hopeful that she can begin to walk around town without having to depend on someone to walk with her. She still has double vision and this remains the main obstacle to complete independence. Without her vision resolved, she cannot drive, steps and uneven ground are harder to negotiate and vision in dim light or darkness is very difficult.

To this end, we are continuing with prism glasses and aggressive therapy to resolve the eye issue. The other end of the equation is suppression - which will happen anyway, so we figure out why not try the new in the event that it works.

From the outside looking in, I see Marilyn becoming sharper every single day. That's the best way I can describe it. We're certainly not at a point where I forget she is injured, (although I really look forward to that day) but it is at least becoming more and more background. And that allows me to hand her more and more of her life back, which will be the subject of my next post....

"...Your Own Reason and Your Own Common Sense."

"Believe Nothing, No Matter Where You Have Read It Or Who Has Said It, Not Even If I Have Said It, Unless It Agrees With..." This is another refrigerator magnet quote, this one from Buddha which, given my new re-found reasons and new re-found common sense, has resulted in some new found beliefs. I got back from yet another trip to Denver for some follow up care. In all honesty, I was not looking forward to it in the slightest because I believed it was a just another big reminder of the fateful bike accident that brought me to Craig Hospital in Denver in the first place. But, like Buddha said, my own common sense was being being tested and the dreadful thoughts were of different outcome. It was actually comforting to see the therapists who cared for me when I was hospitalized. What took me by unpleasant surprise was the overwhelmingly obvious fact that Craig didn't close its doors when I was discharged but the hospital continues admitting new brain injured patients. The very horrifying reality that brain injuries do happen in such massive frequencies and quantities was what hit me hard. Knowing now from my personal experience that their lives will be indescribably changed forever after a TBI was what saddened me and brought me to tears.
My second common sense check was my 37th birthday, my first birthday (but not last) since the accident. I did have a wonderful time with Gareth, and ended the day with the belief that I dodged a deathday to get to celebrate a birthday. I do not consider myself lucky that I didn't die or end up in a wheelchair, that would make death and spinal cord injuries unlucky, and they are truths that we have in the world and if you think you are lucky because you didn't spend today in a wheelchair then you obviously have too much time on your hands. I am lucky that I can use my left arm to drink a beverage and that I am working on walking, and it is the presence of these actions, not the absence of an action, like death, that I am working hard every day to achieve. The bike accident and its results can't be changed, but my actions to improve myself can make the future brighter for me and Gareth so I will continue daily to push for that belief.

Life at Home

It is hard to believe that we are into our fourth week back in Dolores. The first week was challenging, with the glaring reality that life was going to be much different from how it was when we walked out the door last fall. Desire loomed large with sharp memories of our previous lives all around us. Since returning, we've both expressed the desire to go to sleep and then wake up in the morning with the day ahead only offering the challenge of our respective jobs as opposed to the overbearing focus on recovery. But, slowly we’ve adjusted with many thanks for so much help from our friends. And since our expectations of life upon return were low – scratch that – non-existent, each day often brings an unexpected treat. Soaking in a hot spring, walking around town amongst sky high piles of snow and ice, braving a visit to the pub, Marilyn dragged out of the rec center after four hours of workout, and even a handful of ski days for me are a few. Time and therapy are our allies and enemies now, patience our peacemaker. Faith brightens and brings the horizon closer.

"If you`re going through hell, keep going"

I hope everyone knows we made it home (to Dolores) about 2 weeks ago. I want everyone (including Gareth) to know that Gareth has been my inspiration to continue to put forth the efforts that are clearly required for me to resume my life as it once was and will be again someday, so I thank, love, and admire you Gareth. I continue to pray (to Buddha) our future will be an improvement over the present, which is a hell and a challenge on many fronts. We will keep going through this hell until we have made it through, Gareth, just you keep believing, because I see that we will be a stronger, more resilient couple when we have survived this....(blog title and reference is a Winston Churchill quote on a greeting card that I came across while going through the myriad of my belongings when I got home; it is now posted on our refrigerator and seems to fit the situation). My thanks to the Osprey Corp for my "Gareth time" -we both have learned his value, which Osprey has finally reclaimed now that we have made it home! Hoping my patients will get to claim me back soon too!

The single most challenging aspect of being home is that the last time I was here, I had nothing physically wrong with me. The reminders of my life as it was prior to the bike accident are just everywhere. The snow, however, is not a reminder and does not bring back any memories of life in Dolores (this is more snow than I have ever seen here, yeah skiers!) I am also struggling with my inability to do things in a timely fashion (but I am getting a bit quicker, though still a bit sloppy, not a new feature but one that has been magnified by the injury and is definitely a challenge for Gareth to keep up with!) The list of my little physical deficits could go on but I will spare everyone and not list them here.

However, being home has its positive sides: my own bed and belongings; the doggies; the wonderful friends who have given up their free time to drive me to Cortez to get to therapy; my physical, occupational, and speech therapists; no more "hospital" dinners and frequent "whenever needed" espressos! The sheer amount of occupational therapies we all do daily is amazing and forcing me to keep getting better at doing the littlest things. Keep praying that my left side and my vision strengthen and I will see you all as soon as I can (let's hope I only see one of you and not two, which is the double vision rearing its ugly head)...marilyn