So some of you may be wondering what happened to me recently? I know I’ve more or less fallen off the end of the virtual Earth and actually for once I’ve got a very good reason. Things were going along more or less nicely in February, I ended up coming down with strep throat (not uncommon for me) which was followed by a cold about half way through March. I weathered both of these as stoically as I could and felt like I was on the mend and had started to get ready for Elk Mountains Grand Traverse at the end of the month. In fact, my skins had been cleaned and re-glued, my bag was packed and I had even started getting my food and water ready when on the 26th of March I went down the stairs after putting in a day at the office, bent down to give Aral a hug and woke up with paramedics and police swarming over my body. At the time I must have been having a seizure because I could not talk or move.
Making a long story short, I was transported to the hospital here in Gunnison. I don’t have very clear memories of my time there, but I know that the next day they loaded me up into an ambulance and shipped me off to Grand Junction where an EEG could be added to the tests they had already run. I spent the remainder of the week in the neurological ward of Saint Mary’s Hospital.
By Friday afternoon I was ready to leave the hospital and Tess took me to my parents house up on Glade Park. Saturday morning we left for Gunnison and I’ve been without recurrence of seizure since late Friday evening although I’ve felt the pre-event symptoms on occasion since returning home.
I’m not certain if the medication they have me (Keppra) on is actually working to prevent reoccurrence, it certainly has some side effects. In the mornings in particular I feel physically wasted until about 30 to 45 minutes after the first dose of the day. Then the sensation of being physically fatigued slackens and I get to deal with a little dizziness and what feels like depressed mentation. I don’t feel sad, I feel slow and have trouble making connections. There have been a couple of mornings where I’ve gotten up and soldiered on through these sensations to get things done. Generally I end up feeling better, but by the afternoon I’m back to feeling physically exhausted and usually need a nap.
Right now I feel like there are two challenges I need to deal with before I can “get better”. First, I need to clearly define what getting better actually means. There are no clear objectives I can define for myself; nothing I can clearly work toward. I’ve been dealing with this more or less moment to moment (not even day to day) because that’s how its throws those balls. I’d like to know under what conditions I will be considered better so that I can work toward achieving those conditions as a set of goals or, if that’s not possible, then at least what are some activities I can master in the pursuit of this as a means to an end.
“Time” and “rest”, even “less stress” are great but tend to be very ill formed as metrics. In other words, I don’t feel like I can achieve these because I don’t really know how to chase them down. I need help from friends, family and physicians to articulate what this means and develop a means of achieving it.
Second challenge, is that I feel very hopeless. Writing this post for instance has really challenged me because I have to momentarily stop to think about what the next letter or word might be. I forget what my intent was often and if I cannot remember why I went into the room or what it was I wanted to write I am extremely frustrated with myself. I’ve lost my marbles and sometimes I’m not in control of what I’m thinking or how I feel. This is very depressing and from inside this tunnel I can’t see any light yet. It doesn’t help that I still feel shame at my lack of strength and obvious failures.
I need to say thanks to everyone who has helped or offered me a good word or even just taken a moment to say something friendly to me.
5 thoughts on “What Happened, What is Next?”
I am so sorry to hear this happened to you and hope that you start to feel like the strong healthy guy that you are very soon!!! I can understand your frustration with the medication the doctors have you on. I too suffer from moments of stupor with the medication that I have to take for my recently discovered pseudotumor cerebri. It is incredibly difficult when I am trying to correct the kids and can’t think of a word or when I have to go to meetings at work to do a briefing and stumble on my words. I will be praying for the doctor’s to figure out what is happening and also for you to continue to heal. Take care and even though we are separated by the continental divide please let us know if you and Tess need anything. ~~ Bridget
As someone who I would describe as hyper-functional, the idea of not being in control is a very daunting prospect indeed. I would suggest the first thing you do is acknowledge and label the aspects of your life that are presently beyond your control, primarily in the sense that they are much more difficult to both change and categorically measure improvement. But let’s see what we can do. Stress: this one is difficult, as we tend to internalize stress to the point where we are not even consciously aware of its presence or its physical effect on us. I would suggest breaking down the major aspects of your life and trying to ascertain where stress may be coming from with a special focus on what things you can actually impact. When you do this, you need to be able to identify even the things that might make you and yours uncomfortable. You are used to being the stress ‘beast of burden’ because you are hyper-functional. No more my friend. Others must now carry you in the sand, if only for a short time. Use your friends and family, as they have used you.
Rest. I know you pretty well Mr. Thyer, and if I know one thing about you it’s that you bust your ass. You bust your ass doing whatever needs to be done until it gets done. You are used to taking care of others and other people’s problems, even to the point of detriment to your own needs. No longer. Rest is awknowleding that you need to slow down. Frustrating? Yep. Annoying. Sure. But first look at what you’ve accomplished so far; you have done amazing things, many amazing things. Now take some time off before you fall down the stairs again. You need to accept that there’s going to be a period of time where you will not be able to be hyper-functional. Embrace it, acknowledge you are not in ultimate control for a short while…
Time is time, there’s not really any way to get around the fact that this is ultimately the most immeasurable yet readily measureable aspect of our existence. You have to be patient. Easy for me to say, right? I think the emphasis on time as a curative aspect is that very idea: you have to allow the process to unfold, no matter how annoyingly long it might take. It doesn’t mean you can’t do other things or try to recover, it just means you can’t get down on yourself because things are moving as quickly as they would in a modality in which you have most if not all of the control over progress and outcome.
Now that we’ve talking about these nebulous annoying things, I could go on and on about the things that are still under your control. Set little goals for yourself. Write a little in a blog or journal every day. If you’re too tired or spaced to set out a whole plan, write down ideas. Play with your beautiful baby boy. Sit in the sun. Being alive is awesome, even under such annoying circumstances. You are blessed my friend, with many, many who adore, love, and support you. And we’re still all here, ready to cheer on every step you take to recovery.
Thanks for this note – it is a very well written and clear analysis of your state.
You are an exceptional human – intelligent, compassionate, aware and energised.
My experience with rehabilitation in 2011 and 2012 may be helpful.
When walking the Overland Track in Tasmania in February 2011, I fell on my back and lost all sensation and control below my neck for about 10 minutes. With my son’s help, I finished the next three days of the walk.
I consulted Neurologists. Everything checked out OK. However, I felt vague and was not functioning at the high level I considered normal. My condition worsened – transient loss of feeling in my hands and legs – and pins and needles. I felt clumsy in movement and thought. At work, I overloaded on caffeine and pretended everything was OK. At home I was exhausted.
Easter 2011 was a low point. I worked all weekend on a major application release for a customer. I screwed it up and was too embarrassed to ask for help.
Related pain in my hip and knee compounded the situation. I couldn’t exercise or do the simple walks that sustain me – not to mention the longer walks in the wilderness that are essential to me.
One surgeon said I would need a vertebrae replacement. He said I was an awkward step off a curb from becoming Christopher Reeve. A second surgeon suggested a less invasive injection of steroids next to my spine; I received two series of injections from June to September 2011. I told the surgeon my objective was to be able to carry a pack on a multi-day hike again.
My spinal symptoms faded, while my hip and knee worsened. I had arthroscopic surgery in December on my hip. I started physiotherapy.
A few weeks ago I took a walk with my family and they all commented on how I was not limping anymore and how Sam and I were out walking ahead again.
At a follow up with the Surgeon, I asked if reaching my objective of wilderness backpacking were realistic. He said yes.
At work, I limited my coffee to once on Friday. I do some kind if serious physio or exercise at least once a day. Slowly my work mojo returned – but less manic than before – a good thing.
My struggles over the year probably meant that I lost a big commercial opportunity. I am OK with that. The project will end in June and I aim to take a long solo camping trip to Fraser Island, confident that I am not taking silly risks.
Pia wants to realise a lifelong ambition to visit Italy and Sicily. I can do that now too
If the work project rolled into something bigger, I would have deferred these things.
Lessons l am learning:
– Second or third opinions: Many Doctors have serious ego problems and are in a business. On the other hand there are some amazing medical technologies available.
– Time: do the therapy.
– Joy: in the precious small moments – with family – with nature. Slow it down to take them in.
– Learning and Plasticity: the ability of humans to adapt. “The Brain that Changes Itself”, Droidge; Is a good very readable hub of research on neuroplasticity.
– Wisdom: I reckon comes from persevering through adversity.
Hope this helps. It was helpful to me to write it down. I wish and your family all the very best.
Take care buddy. This is your body telling you to slow down. This sounds tough.
When I was living in Scotland, away from my family, one day I woke up with vertigo. It was constant, intense, and a debilitating dizziness that for the next 3 months that prevented me from , walking, showering, and easily going to the bathroom. Finally, two years later and I finally feel a resemblance of normal, though I still haven’t tried riding a bike again. But I am able to walk and function fairly normal. I can now take care of myself.
I saw a neurologist. I was put on a migraine diet, no caffeine, wine, cheese, and plenty of rest. One thing that I wasn’t getting before the vertigo was sleep. I would only sleep 3-4 hours a day. So now I make sure I get 6-7 and I don’t drink any caffeine. I take naps.
I blame it on stress. I was getting my Masters, living in a foreign country all by myself, I had just been given a new responsibility (Exec. Dir. TMS), and I had mucho papers due.
Now I stretch, do acupuncture, and overall I do less. Mostly because I know if I don’t the dizziness will come back and I won’t be able to function at all.
It sounds like your family is there for you. That’s great. Let them help you. You need to mend and rest to be able to take care of yourself.
I wish you the best with your health,
I recall that you were having trouble when you went to Scotland. I wasn’t really aware of its nature, but it sounds pretty similar minus the seizures. I know I sound pretty down right now, and I’m having some dark moments for sure. But I’m trying to see this as a point in my life where I get to change direction. That helps with both the loss of control as well as some the material loss I’m dealing with right now.
This month was 12 years at my company, tomorrow I go in to fill out short term disability paperwork. I’ve pulled out of a lot of “extra” projects including FMARS which I’m bummed about (at least a little), but you’re right I really need to stop doing so much.
All those doors are open for me, I just need the courage to try them out. Yesterday I had my first acupuncture session ever and I left feeling pretty good. Spending some time at the yoga studio. I can’t drive any more so I’ve got my bike running again and spending lots of time in the saddle which is its own kind of meditation.
Day at a time, thanks for the good wishes!