Friday, April 22, 2011

Good Grief

Some days it hurts as much to look forward as it does to look back. As Kiera and I waited in the reception area before the appointment with my new neurologist we discussed the grieving process a bit, and my take was that it's a very individual thing. Most people are familiar with the Kubler-Ross model for the different stages of grief, which includes denial, anger, bargaining, depression and acceptance. It's said the order isn't concrete, and while people don't necessarily go through all the stages, they often face two or more on the list.

I don't buy it. First of all, it omits "avoidance", which is the stage I find myself in on most days. Some might try to shoehorn avoidance into denial, but I'm not denying anything. Watching a dad do a cannonball into a pool to splash his kids pains me, as I can't help putting myself in his place. I can't move like that now, and my mind reaches out in both directions at once, remembering when I could and worrying about whether I ever will again. I don't pretend this isn't happening, but it just hurts too much to think about it, so I avoid it.

Putting Multiple Sclerosis out of my mind is tough (see post below), but the longer I deal with it the easier it gets to put it on the shelf. Feeling a bit better from day to day helps too, and I have been improving a bit as evidenced by my recent runs. When I'm not researching options for medications, diet, supplements and exercise/therapy to help me, I try not to think about it at all.

So why am I writing about it if I'm trying not to think about it? I think avoidance can only help (hurt?) me for so long, and writing keeps me genuinely work through my feelings. I want to write about what happened today.

My friend Lucas has been unlucky enough to be present for several of my running breakdowns. Back in December I was already feeling the effects of MS, though I didn't know it at the time. The legs felt weak, like they were going to come out from under me, and when I tried to put the pressure on with a workout I had disastrous results. We lined up to do a series of 1000's on the track, and I fell apart so badly by the fourth one that I stopped, dropped my hands on my knees and started crying. During the repeat a thought that was fermenting for weeks finally broke from the back of my mind to my lips. I said to the ground,"I've gone from trying to go where I haven't gone to trying to get back some of what I had." It was a low point, but soon enough things would get worse than I ever imagined.

I've gone through the MRI's, steroids and diagnosis since then, dragging along at 10 minute pace for 15 minutes has led to 5-8 milers at what used to be my easy paces. Lucas was with me again for an 8 miler today, and half-way up Dog Poop Trail my I.T. band finally gave way. It had been a bit sore for the past week, but alternating days and stretching had helped it along until today. It ground me to a halt, and Lucas was nice enough to wait three or four times as I stretched, then hobbled, then started jogging again while biting my lip. I broke down with about a half mile to go, muttering about how much it out and out sucked that I couldn't change my leg swing to avoid this. It's been very difficult getting back to this point, and getting injured on 20 miles per week isn't part of the deal.

Pain should be different now. It should be annoying, but that's where it should stop. Quite simply, there are bigger things to worry about and a jab in the side of the knee shouldn't rank very high. The truth is it feels like more than that. It feels like another December workout. It feels like slowly pulling yourself out of a deep pit, inch by inch, only to have someone step on your fingers when they finally grasp the lip.

"Can't I have this?" is unproductive as a mantra, but I find it springing to mind a bit too often, especially when it feels like more and more gets taken away. It's supposed to be a trade off; innocence for experience, youth for wisdom, that sort of thing. The game feels rigged. That leaves either watching as more and more of my pieces are pulled from the board or changing the game. I've chosen the latter. In my next post I'll tell you how I treat my Multiple Sclerosis.

Thursday, April 07, 2011

Oh Clippy

My friend Ian of the extremely entertaining How to do Everything checked in after reading about my diagnosis, and I'm posting a bit of my reply to him regarding my running future and life in general now:

I don't know if I'll ever get to a level where I can actually train comfortably, though I'm hopeful. In my case the cervical and thoracic spine seem to be where I'm having problems, which is challenging my mobility, strength and balance. There's also a real problem with heating up and fatigue, which isn't easy to deal with given our average temperatures. The grieving period for my athletic endeavors lasted much shorter than I guessed it would, but with so much other stuff to worry about (cognitive difficulties, mobility, premature death and catheters and other nastiness), plus the family and the financial burdens made competing at a high-ish level seem trivial. Much as I hope to get back to decent mileage for mobility's sake (40-50MPW would be ideal), I don't reasonably expect to ever have another PR again. If my left leg and hip flexor magically start going where I want it to that might change.

Honestly the hardest thing is just having this press down on me every second of every day (plus the time it keeps me up at night). As I've said to Kiera, it's like having your arch nemesis (be it a co-worker, running buddy, annoying family member or random friend/acquaintance) tied to your leg at all times. As you can imagine, it turns life into a long, sadistic 3-legged race. A new (and slightly less depressing) analogy that's come to mind is having "Clippy" (remember the old Microsoft Word animated paper clip) constantly in the corner of your field of vision. "I see you are trying to navigate a crowded stairwell and you are feeling uncoordinated and off-balance. Would you like MS to make this more stressful and difficult? No? Too bad".

All this being said, it's been a good week. The runs are coming along, I'm feeling stronger in the weight room, and I'm getting more coordinated in my Pilates classes. I started a short course of the steroid Prednisone last week, which might explain these gains, but I'll take it. I've been tapering down the dose every two days, and I'll be off it by this time next week. I've found that this second course of the drug definitely gave me more pronounced mood swings, and there are certainly more side effects ahead once I start the high dose Interferon drugs (hopefully next week).

Even with all this, life goes on. Our band Lunar Light Collectors plays a gig tomorrow night, and while it was a bit sad to have to reorganize my guitar effects pedalboard to accommodate my newly jittery and off-balance left foot I'll be glad to play again.

Tuesday, April 05, 2011

February 16

I knew something wasn’t right. They'd kept me in the tight little MRI tube longer than they said they were going to, which seemed odd since I was obviously very nervous and anxious to be done. The lead tech told me to be as still as I could and to try not to swallow as they took the last three minute section of images of my cervical spine. This was the second go-around for these images, as they took this same series once at the beginning and then again after giving me an injection that would make suspicious matter fluoresce or show contrast when reviewing the results.

At this point I’d been in the tube for about an hour and 45 minutes, with much of that time spent with a tight plastic contraption over my head, so I was getting impatient and a little bit shaky with only a cup of coffee, a piece of toast and three nervous hours of sleep under my belt.

The manner of the two techs had changed. One I’d met previously for a routine MRI in my lumbar spine a few weeks earlier. That visit had gone smoothly, as I spent only 30 minutes or so in the tube and I was positioned far back enough in the machine to be able to look back and see my way out (small comfort but comfort nonetheless). That MRI had revealed a herniated disc and a bulging disc down at the base of my lumbar (between L4 and L5 and between L5 and S1 respectively). This was considered the cause of my problems until I started presenting enough additional symptoms to prompt my doctor to order this additional series of MRI's.

This time she was assisting, and while she started out with the same light and cheery manner, but by the time we got past the first section of the imaging with contrast material I started to sense that something had changed. She and the other male tech were getting more serious, which made me even more nervous.

When it was finally over I tried to get a read on what the techs had seen, and while they tried to remain poker-faced they revealed some clues. “So how long does it take to have this sent to my doctor?” I had an appointment on Monday, and this being Wednesday I wanted to be sure it was sent over in time. “Someone will read yours today and send over the results”. “How long does it take to send it over if it’s a normal result?” , I followed. “Normally three to five days, but someone will look at this today”, he repeated. I left the radiology center and drove to work a little shaken, but I figured I could have misinterpreted his words and hoped for the best.

Later that afternoon my co-worker patched a phone call down to me, saying my doctor was on the line. I went into a full body clench and stared at the ringing phone. I knew the sooner I heard, the worse it probably was.

“Several irregularites”. “Areas showing contrast”. “Spinal column”, “Frontal lobe”, “It looks like it could be MS”. I can't remember the whole conversation, but I still have the notes I scribbled down at my desk. The word 'cancer' was scribbled and crossed out and Multiple Sclerosis was written next to it.

The next afternoon I was sitting in a neurologist's office with my wife going over the MRI's and discussing a spinal tap to confirm his preliminary diagnosis of MS.


Just to end this with a little humor: If you ever have the pleasure of having an MRI, the facility might invite you to bring in your own music to help comfort/distract you. A word of caution if you decide to do this: You will never, ever be able to listen to whatever you listen to without being reminded of the pleasure that is an MRI.

To this day I can't listen to Norah Jones without feeling sick (techs choice, not mine), and Wilco's Sky Blue Sky is ruined forever, except for the song "On and On" because it's just so damn appropriate.

"one day we'll disappear
together in a dream
however short or long
our lives are going to be

i will live in you
or you will live in me
until we disappear
together in a dream

please don't cry
we're designed to die
you can't deny
even the gentlest tide

on and on and on
we'll be together yeah
on and on and on
on and on and on
we're going to try"

Friday, April 01, 2011

The Same, but Different from now on

Or whatever happened to Mike?...

Shoes go on and I close the garage door behind me. I start slow and stay slow, running up towards my my old routes in Sabino Canyon. After a short while I drift back towards home, finishing slightly faster than I started and stopping the watch at just over 20 minutes.

Kiera's made scones, the kids are on spring break so there's no rush to do anything, and I sit down to breakfast before heading to the gym for Pilates class and a swim.

Did he just say Pilates? Yeah, I did. Simply put, things aren't the same. The 80 miles per week I averaged for a few years while chasing the still-elusive 2:29 marathon with Mystery Coach have given way to weeks of zeros punctuated by 2-4 mile runs when the body is able. On good days like today I almost feel like my old self while running the last mile home until I catch my long shadow to my right, which shows a very slow runner heavily favoring one side while pulling his left leg along, just keeping it high enough to (usually) stop it from dragging along the ground.

When the run ends the scones aren't the usual buttery ones with chocolate chips and other goodies. Kiera was kind enough to make a dairy free, low-fat variety that works with the new diet. Delicious as usual, but not the same.

At the gym Pilates helps keep me in some semblance of shape. I'm focusing on my core strength more and more as balance has become a real issue, and I'm even throwing in the odd yoga class when my schedule permits. The swim that follows is more for my spirit than fitness. I feel more free in the water than while doing any other exercise, as without gravity the numbness on the left side from my chest/upper back down to my toes doesn't affect me as much. Also it alleviates the constant constriction I feel around the left mid-section and around the toes on my left foot, which usually feels like I'm stuffing my foot into a cycling shoe that's two sizes too small.

I quit the swim early to give myself a few minutes to soak up the sun, as several medical studies indicate that extra Vitamin D is important and therapeutic. I try to memorize the feeling of sitting on the deck chair with the sun on my face and the breeze drying me, and the squawking from the water aerobics crowd slowly fades away when I close my eyes.

I'll try to come back to this place and these feelings when I'm strapped down and sliding into the MRI machine with a Gadolinium drip in my arm in a few hours. It's a tough few hours as I'm no fan of tight spaces, but it's unavoidable for someone in my condition.

I was diagnosed with Multiple Sclerosis on March 18.

When I started this blog I enjoyed relating the positive experiences that running and life afforded me. Things are different now, but I feel I can benefit from sharing this experience as well. I hope by writing at times about what I'm doing to stay healthy and vital with MS I can continue feeling empowered while dealing with a disease that specializes in stripping power and independence away.

What remains the same is my incredible family and the support and love they offer, and for that I am eternally grateful. I also have many good friends who show me the same kindness, and I'm thankful for them as well.

I hope you will stay tuned, and I hope Mystery Coach will still keep up the running end of things around here. Thanks for reading.