IT WAS THE BEST OF TIMES…
And what a year 2010 was…Vincent transformed from a toddler into a little boy and Gianna started walking, talking and each day growing more and more into a twin of Angela -- just as her Dad had feared. If only she looked more like me, I’d have a lot less to worry about when she becomes a teenager!!
Angela finished another year working part-time at the MS Society and full-time as Mommy to Vincent and Gigi. In addition to managing the household and taking care of her four babies (Jäger and I finish the quartet), Angela added yet another dimension to her life – running. What started off as a quest to get back into an exercise routine eventually progressed into running her first race, a 5K, in October. Since those 3.1 miles were a breeze, she decided to up the ante, with the urging of her running partner, Carolyn, and will be taking part in a half-marathon next month. Wow! To say she is an inspiration would be quite the understatement and it would be impossible for me to be any prouder of what she has and continues to pursue/accomplish.
…IT WAS THE NOT SO BEST OF TIMES
For my buddy, multiple sclerosis, 2010 was also quite the eventful year.
Unfortunately for me, that means I lost a few battles but I also realized I’m never going to lose the war.
There’s a lot to cover and I’ll start with yet another encounter my eyes had with optic neuritis. I used the plural form intentionally because it started off with my left eye and eventually worked its way to my right…and unfortunately decided to unpack its bags and stay awhile.
With each new morning, I await the bag of goodies to open from MS. Usually, the first few minutes involve me just laying there and – as I explain it to Angela – “put Humpty Dumpty back together.” Some mornings all I can feel in my hands is the prickly and tingling sensation that encircles them. And others, it’s my legs or feet leading to a leisurely beginning to my morning as I gingerly take my first few steps, either dragging my leg or bracing for a fall when/if my leg gives out. Thankfully, by mid-morning, these symptoms have dissipated a bit and I return to feeling somewhat human.
So it wasn’t that surprising to me in mid-August when I woke up with pressure around my left eye. I knew this feeling, like somebody had punched me in the face the night before…the pain is throbbing but manageable. Or maybe I’ve just gotten used to all of these strange sensations and they’ve become the new normal? Either way, I knew something was up - my MS radar had gone off. I’m extremely careful about how this radar/alarm is calibrated, too. If you review through “typical” MS symptoms you’d quickly learn that (1) nothing is typical, although there are many similarities, everyone with MS lives it differently and (2) just about every poor experience your body has, could or could not be related to multiple sclerosis. This disease impacts our brains and spinal cords and because of this it could impact nearly every aspect of our daily living.
So, if I have a headache…is it MS? If I trip on the stairs or lose my balance…is it MS? If I get dizzy and need to sit down for a moment to collect myself…is it MS? While many of the symptoms are pretty easy to identify as MS there is also a long list of ambiguous, grey areas and I like to use caution first before just attributing it to multiple sclerosis. It’s not denial or some badge of honor that I wish to boast about…it’s actually an attempt at self-preservation. If I lived each day, fearing what is coming around the corner, or associating each ache, shooting pain, numbness or other oddity I experience to MS, I’d never have internal peace and that is one thing that MS can never take.
Over the past few years I’ve had my share of eye problems. Throbbing pain around my eye socket. Blurred or kaleidoscope vision. Flashing lights. Vision so sensitive having a light on in a room feels like somebody is literally digging a screwdriver into my eye. Even momentary loss of vision. So it’s not shocking to me when they happen (it would be if they didn’t!) but this time I knew something was different. I like to call those eye symptoms “residue” from a previous MS relapse.
Reminder --- I’m not a doctor, just a guy with MS. So I make up my own terms to help communicate this world to others but often it helps explain it to myself, too. I didn’t get recurring blurred vision, etc. before my diagnosis of optic neuritis in 2008. I got it all at once and more. I was treated and things got better but there is always something left behind after these exacerbations and I like to call that “residue” or residual effects. So life goes on but I get constant reminders and on that scorching August morning, as I felt my eye pounding, I knew something was different.
A few days went by, the pain continued and even got worse and my vision began to be routinely impacted. Later that week, I had an appointment with my neurologist. It was a routine check-up but also we were going to discuss the results of my latest MRI, to see whether my MS has been progressing, getting better or staying the same. I didn’t want to go into my appointment with a half-story about how I think I have optic neuritis (ON) again so we set up an appointment with my ophthalmologist and, not surprisingly, was diagnosed with ON in my left eye.
I wasn’t hoping to get this answer but it was helpful to have confirmation of ON when I met with my neurologist. Since the ON was “manageable” (my description) we decided to hold off on any treatment for it. I knew the next step would be an IV steroid treatment and that just wasn’t high on my list of things I really wanted to do. Yes, my eye was bothering me but also around that time I was very sick. Not MS sick (although sometimes I can’t tell between the two) but feverish, night sweats, every bone in my body ached, couldn’t get comfortable in any position other than just lying still on my back with a wet rag on my forehead type of sick. I was being treated by my primary care doctor for this at the time (this fun story is for another blog entry) and I just couldn’t imagine being strapped down and taking an IV – my eye was bothering me but it wasn’t to the point that I thought needed treatment, at least not yet. We agreed that I’d closely monitor my eye and be in touch with him immediately if anything got worse.
The good news is, my left eye did get better. The bad news is I wasn’t fully healed - the ON just moved to my right eye. I feel like it happened overnight. Literally.
“Daddy. Daddy! Daddy, let me tell you something. In my dream I had a truck, a big truck and there was a puma in the backseat and my sister was in the front seat. It was my truck, it was blue and it went really fast and...” – that’s how the morning started off for me, Vincent coming to my bedside to tell me an elaborate story about the dream he had during the night or maybe just random musings of his. If Angela and I were smart, we’d write down each one of his “screenplays” and create a blog that will one day be turned into a TV show a la “Sh*t My Day Says,” renamed something like “Stuff Vincent Says.” This particular morning, as Vincent entered the “I’m a puma today, Daddy” part of his address, I noticed something way off with the vision in my right eye. I tried closing and then re-opening my eye several times, washing my face, anything to snap my vision back into place. As much as I wished my impaired vision was just a loose eyelash or a function of me still waking up it was not meant to be. The ON had moved from my left to right eye and five months later it still hasn’t recovered.
Remember when you were little and were amused or curious about everything no matter how ordinary or fascinating it might appear to adults? Having two kiddos is a constant reminder of those days, finding hours of enjoyment from just playing in a box or building a fortress out of pillows. Now imagine you are eight years old again and looking at yourself in a mirror. You’d breathe really hard into the mirror so it would fog up and then you could draw a smiley face or maybe write something silly? That could provide endless amount of entertainment! Ignore the smiley face or inappropriate word choice for the moment and go back to the fogging up part. When I was awoken by my puma son that morning - the fogged up mirror image in your mind – that’s what remained of the vision in my right eye and continues to this day.
When this was all happening, I was having a hard time explaining the exact vision problem I was having to Angela and then I found something online - another individual had encountered the same issue as me and he had actually doctored a picture to serve as a visual aid. The moment I saw it, I knew it was optic neuritis...I've posted it below since in this particular situation, a picture might speak better than words:
Can I drive? Sure. Do I drive a lot if I don’t need to? No. Can I work? Yes. Does it require adjustments? Absolutely. Often, when working at home, I wear an eye patch over my right eye…almost as a form of relief. Trying to review a presentation with colorful graphs or reading a business case will result in dizziness and nausea, best case, without a patch covering up my right eye. If I’m in the office, I find an office product nearby (or usually just my phone) to cover up my eye to assist in whatever I’m trying to view. Can I type? Well, I'm writing this blog but it's not without the obvious challenges. Thankfully, my days in the office are usually spent in various meetings instead of sitting at my computer reading through emails, etc. so I don’t have to work around it as much.
But walking around leads to other fun issues. Yes, I can walk and see in front of me – remember, it’s fogged up – but I really don’t have peripheral vision and what I do see in front of me while walking is sometimes a struggle. If somebody is walking up to me I usually don’t know who it actually is until they are right in front of me. One time, I got on an elevator at work and didn’t even see an individual to my right until they happened to say something. Walking into a grocery store, attending my son’s basketball game, anything with a sizeable population and lots of moving around – that’s pretty much a zoo. I have to stay laser focused on whatever my objective is, whether it’s buying some bananas or cheering on Vincent to score a basket. My eye doesn’t have a lot of energy, or ability, to accomplish much more.
ROIDS WITHOUT THE RAGE
As soon as my vision became this impaired we called my neurologist and set up a steroid treatment. Obviously, my hope was to fix my vision but beyond that, I wanted to protect it against any further damage. I won’t go into the medical details, I’d fail miserably if I tried, but let’s just say that unfortunately, the steroid treatment doesn’t automatically lead to repair.
The next three days I went in to the infusion facility, got hooked up to an IV for an hour or so and then went on with the rest of my day. Once I finished up my third and final session, the clock started ticking for me…..constantly giving myself eye exams…has it gotten better? Worse? Tick . Tock. Tick. Tock. Nothing. No change.
THIS GUY SURE IS A DRAG
2010 was a difficult year. My experience with optic neuritis and continued eye problems only scratches the surface. Sometimes it’s hard to admit my struggles to others. They might ask how things are going and I’d rather not be the MS Guy…the downer…I’d rather the focus be on them, my kids, Angela – who wants to be friends with, or be part of a family with somebody that always throws the wet blanket on conversations or fun get-togethers? I want to bring happiness into others lives, through kindness or humor. I want my family to be proud of my accomplishments. My parents, somehow, survived the insanity and raised me and my two brothers so they deserve the best and I want to deliver that for them. This is the guy I want to be. Not the MS guy. Waking up every day, not knowing what was going to hit me next, then absorbing whatever new ailment did introduce itself, made it very difficult to be the person I wanted to be.
It began to sink it, my vision may never recover. My left leg still limits my mobility, making it uncomfortable to stand for long periods of time and near impossible to find comfort when sitting down. My MRI results came back and the news was not good. My disease continues to spread in my brain and spine and my doctor is recommending more aggressive treatment. I got mono (again). I….could….go….on….and….on…and….on…and..on….and…on but then, something happened. I had an epiphany and it was in a place I least expected it.
ANGELS IN THE PARKING GARAGE
Most weeks, I work from home three days and the other two I’m in the office. Those days in the office are bittersweet. Being able to interact with my co-workers in person is medicine in its own way since working from home can be an isolating experience. Going into the office results brings positive energy from feeling somewhat normal again and the best part is – even on the worst days – I feel a tremendous amount of pride, just for surviving the grind. But it’s also a constant reminder of my physical limitations. The bright, artificial lights that pierce my eyes, always worried about getting dizzy, needing to sit down, taking medicine when I feel my stomach starting to twist and walking around to different meetings has me, by the end of the day, feeling like I was in the ring with Mike Tyson for a few rounds.
It was mid-October…I can’t remember the specifics of my day in the office, but I do recall feeling even more worn down than usual that night as I went down the elevator to the parking garage. My company has a turnstile that we exit through, after scanning our badge, to enter the parking garage where our cars await. As I exited the turnstile and stepped out into the cool autumn night (note for non-Texas readers, this is probably right around 62 degrees)….something happened. As the wind blew lightly in my face, for a moment, I did not feel alone. There were no words spoken to me. They didn’t need to be. This wasn’t an alien abduction. This wasn’t the product of recreational drug use. Warmth. Bliss. Inner Peace. I don’t know if it was angels speaking to me but I’d like to think so. Whatever it was, it provided a moment of clarity and I was the gracious recipient of a few more over the next several weeks.
I’ve done a horrible job keeping up with my blog and it’s my 2011 New Year’s Resolution to change this and hound you all with many, many, many more entries before we bring in 2012. If Angela can train and compete in a half-marathon, then the least I can do is make this work. One entry I’ve still yet to make is our trip to The Mayo Clinic where I was officially diagnosed with MS. It was there, at the Mayo Clinic, that we had our initial conversation about multiple sclerosis with a doctor, a thousand miles away from San Antonio in Rochester, Minnesota and he stated that “what they don’t know about MS far, far outweighs what they do know. You could wake up tomorrow and be symptom free for twenty years or you could wake up tomorrow and be in a wheelchair.”
It’s a chaotic existence, not just for me but for my wife and children, too. How will Daddy be today? Will Michael be able to help out with Vincent and Gianna this weekend? It’s within this backdrop that I’ve had an internal struggle in my own mind ---- what is going to happen next?? What is this disease going to introduce or take away from me tomorrow? Tonight? Three minutes from now?
This struggle provides no lasting positive value and on that October night in the USAA parking garage I realized that it just doesn’t matter. This disease might never return the full vision that it took from my right eye. Tomorrow could bring new limitations or expansion of other ones I currently have. I’m not happy about this but it’s time to move on from my constant worry about what this means, what might happen tomorrow, what impact this will have in 10 years, etc. etc. etc.
TIME TO MOVE ON
I’m oddly at peace with it all but it’s not surrender. Far, far from it. If I could take a magic pill and make it all go away, I would. But I can’t, so that’s life. I see various medical professionals many times throughout any given month. I’m taking a Copaxone injection each night and have my other daily pills to choke down each morning. I even have to take a pill (muscle relaxer) so I can sleep at night. I’m fighting this thing head on and then letting the chips fall where they do. I don’t know what tomorrow will bring – none of us do in our lives – and that night in October I had that moment – and decided to enjoy the NOW. It was time for me to stop deliberating about the “what-ifs,” and in the process found inner peace with whatever MS throws at me next.