It’s been almost a year since my last posting. Health-wise, I feel better in many respects than I did last Spring when I was on medical leave from my job. I now work from home three days a week and go into the office the other two. It’s not perfect but it’s made a big difference and I’m extremely fortunate that this kind of flexible arrangement was possible. I’ve flirted with the possibility of working more days in the office but then I’m unhappily reminded of the limits my body can currently handle. I’ll get into more details on that later but the primary reason I’ve been neglecting my blog is because of our little angel, Gianna Isabella, was born last June. She’s eight months old now – how did that happen!? She is a bundle of joy, always smiling (like Vincent) – she has her moments, if she’s hungry she will let you and the entire neighborhood knows all about it. That said, she seems much more laid back then Vincent. We thought Vincent was a good baby (relatively) but Gia has been, in most respects, much easier. Maybe it’s because Angela and I kind of know what we are doing now – of course, once Gia becomes mobile that will add a whole new dimension!
I mention Gianna because I obviously like to talk about her, but also because her birth has an enormous impact on my mental well-being as I deal with my MS. There are those days that seem more like nightmares, from a health perspective, but seeing Gianna and Vincent’s smiling faces (or even their screaming ones) are a constant reminder of why I am here and serves as an important focal point if I’m struggling to get through a day.
When I was younger, I remember there was usually a positive correlation to the amount of activities I had in school (sports, work, etc.) with my grade point average. At first, that relationship doesn’t seem to make much sense. The more my schedule was occupied with activities other than homework/studying, you’d think my grades would suffer. But I think it was all of those activities that made me focus even more on my schoolwork – I had to manage my time efficiently – and this made me a better student. Without numerous activities to keep me busy, I think I tended to procrastinate more and had a much more difficult time concentrating on what is important. There’s a limit to my theory - you don’t want to be taking on so much that you are falling asleep in class or at work or worse nodding off behind the wheel (actually, I did my fair share of napping during class but that was usually related to something else entirely).
The reason I bring this up is to explain – for me – how important it is to my mental state to have my family and friends, career, various events to attend, trips to take to (a) keep me feeling as normal as possible and (b) serve as a continuous reminder of who I am. MS is part of who I am, and I’m at peace with this, but it’s only a part. Sitting at home for a few months, virtually on bed rest, was tough - really tough. I wasn’t using my mind. I tried to. I read – a lot. About my industry, sports, politics, history, anything and everything, but it just wasn’t the same. My mind would always drift back to why I was there at home…and it wasn’t pleasant. It was no choice on my part to be there, I was imprisoned by my body. I wish I could have used the whole experience as an opportunity to spend more time with my family. Vincent was graduating into toddlerhood, running around, learning new words every day, starting to use sentences and there I was…miserable. Much of the time I couldn’t be in the same room - the noise, all the activity, the lights – I felt like I would pass out from the unending pain and nausea. And I didn’t want my son to see me like that, unable to play with him, a physical shell of who I was. It was all a constant reminder of why I was at home. I craved normalcy to return to my life. “Normal” is all relative now but returning to work, getting out of the house, date night with Angela, going on a trip, whatever - just being me – there is no better medicine for my mind It keeps me focused and acts as my guardrails protecting me from an impenetrable focus on my MS because honestly, that doesn’t end well. I get reminders constantly during the day, my body and mind fail me in various ways as if to say “Hey buddy, still here!” and that’s fine but my response always will be “Good luck with the whole sclerosis thing but I’m a husband, father and got this whole career thing going on so you’ll need to take a number.”
One constant…constant......reminder are my physical limitations. Did I mention how it was constant? I feel as each year goes by it takes over my body a little more each day. I do what I can to keep active and it’s a work in process. I have my coach and partner, Angela to help me - we both realize how important staying active is to my physical and perhaps just as much mental well-being.
After graduating from college, I realized I had perhaps drunk a few too many beverages (soda pops, of course) and I craved physical activity through working out or sports to become a more common part of my life again. Out of college and living in Shirlington with Brad, I decided New Years 1999 that if I was ever going to have a shot with that new hot girl at Capital One named Angela Mattozzi, I was going to have to drop a few waist sizes…so I started running, Brad taught me racquetball and we started routinely lifting weights again. Running was a love-hate relationship, I sure hated to run but then again, if I didn’t run, I felt miserable all day or week long. It was a fix that I needed. But racquetball was a love-love relationship. Some guys play golf the morning before they get married, I played racquetball (all Angela requested was that nobody hit me in the face, which of course happened within the 3rd or 4th play. I can’t remember who it was so I’ll just blame it on Allard) – there isn’t a lot of standing around in racquetball and that was very appealing to me. Always on the move, using your mind and thanks to my teacher Brad, I did my fair share of winning. Whether in Virginia or Texas, I always found a way to go running and/or play racquetball and it saddens me that neither fit into my life much anymore.
Not that I haven’t or don’t continue to try. Probably about six months ago I decided to relive my youth and play some racquetball again. Some guys at work heard me talk about how I liked to play and invited me to play some cutthroat (3 people on the court). I was rusty but it was a beautiful reminder of how much I loved to play and winning of course only made it that much sweeter. But it was payback on my body the next few weeks. There is tightness and pain that comes from not working out for a long time but this was way, way beyond that. Even when I was out on the court playing, my legs, hands, face were all tingling. I’d play a game (within the actual game) with myself where in between points I’d wiggle my toes waiting for the next serve just to make sure they were still working – I’m delusional like that, I believed by constantly moving my toes back and forth that there was no way I can lose feeling in them – I did, anyway and the next week or so was more of the same but much, much worse. I told Angela before I went to play that night that I knew I was being selfish and irresponsible but I had to enjoy playing a sport I love again at least one more time. I’m hopeful to play again but in the meantime I have to be realistic about my limitations. Same goes for running – it’s bad enough that when I’m running my mind is constantly worried about one of my legs giving out but having 30 minutes of enjoyment just isn’t worth what follows. What I miss most about running is what an escape it was…I would always do my best thinking when I was running. Whether I was trying to solve a question for work, school or home – running was like a magic wisdom potion. Most times I wouldn’t even go run to think or solve, it just happened. Angela would laugh at me after just returning from my jog, barely able to breathe, sweating profusely and I’m either trying to communicate to her the latest from my problem-solving session or writing it down to make sure I’d remember later. I miss it. The part that sucks the most is that not playing racquetball or going for regular jogs is a constant reminder that MS is winning that part of my life.
It’s a good thing I’m so hardheaded, competitive and annoyingly optimistic. So I can’t run or play racquetball, anymore. Fine. I’m getting older and both would be bad for my knees, anyway (MS or not). Now that it is warming up outside we’ll start walking again as a family. I take breaks when needed and certainly won’t impress anyone with how far we walk but I’m not angling for an Olympic invite, I just want to keep my body in motion. Swimming is supposed to agree with folks who have MS so we’ll give that a shot. Angela keeps pushing me to do some yoga with her and at some point I might relent. It’s not a macho thing – I mean, really at this point I’ve been humbled enough by the past few years – rather, I just think yoga is kind of boring. I can’t get into it. I’ve never been one to sit still, close my eyes, drift off to that special place blah blah blah…the point is that I’m not giving up. I can’t give up. After reading my blog or patiently listening to me talk about a part of my journey the past few years, I’ve had a lot of people tell me how courageous I am, or how they can’t believe what I put up with and are left with general admiration of how I’ve coped with it. I’m thankful for those thoughts and comments, it’s very comforting to hear…but at the same time I know there is nothing magical or special about how I’ve coped or responded. I guess I ask myself, what choice do I have? Waking up in the morning, laying in bed knowing that when I step out I need to step out on my right leg because if I do on my left leg it will give and I’ll end up on the ground and that I need to factor extra time into my morning routine before work specifically for my left and possibly right hand both not being able to do something as simple as open the toothpaste ---- well, that is much preferable to the alternative of not waking up at all.
In the article about Neil Cavuto that I provided a link to in my blog and on Facebook, what resonated with me wasn’t necessary the fact that he has MS but more his outlook on how it’s not going to let hit stop him from achieving his dreams. In addition to limiting Neil’s mobility, MS has also caused severe vision problems. So what does Neil do? He basically memorizes his scripts just in case he starts having vision problems while he is on the air. Amazing. Adapt, Solve, Learn. That’s what I’ve done the past few years – and I think this is what the motto becomes for many of us with MS. Standing in place for more than a few seconds is difficult, so I adapted. Often, Angela and I will give each other a knowing smile as she sees me standing there, all of my weight on my right leg, as my left leg is slightly bent up…long term solution, it is not, but in the chaotic world of juggling family, friends and career, putting together the ten year plan takes a little bit of time to map out. I’m now more proactive – if I need to, I speak up about it more to or if the option is available, I just sit down.
Or sometimes it is speaking up to myself - for example, shaving in the morning is not a great way to start my day since standing still in place has become one of my least favorite activities. It doesn’t take more than a few moments before the leg pain becomes unbearable. Shaving (for me) can already be pretty time consuming but even just brushing my teeth in the morning or at night can be uncomfortable. Often, rather than stand, I’ll sit on our bed while brushing my teeth. If I thought I could get away with it, I’d grow a Mountain Man beard and just avoid the situation all together but that’s not going to happen so why start each morning with so much aggravation? Solve. So, Angela did some shopping online and found me a very comfortable ottoman to sit on with a free-standing vanity mirror to use while shaving - problem solved. I don’t tough it out unless it is absolutely necessary. There are plenty of moments each day that will require 100% physical engagement and I need to reserve my energy for those times. Within our home, Angela and I able to create workarounds like the ottoman but outside of the confines of Château de Wentink it is a little more difficult.
Through Angela’s encouragement and my own facing of reality, we recently got handicap placards for both of our cars, if the need arises. I have days that are alright and days that aren’t so alright and on those days, if the situation calls for it, we’ll use the placards. It’s really a mental thing for me. There are over 300 million Americans and I doubt anyone is paying attention when we pull into a handicap space but I feel like the entire world is watching, whispering, judging and shaking their heads in disgust as we pull in and I step out of the car. It sounds silly...but most days I walk fine – I might feel that others are noticing a small limp when I’m in a lot of pain or drag in my leg when I lose a lot of feeling but generally speaking I look like most other 33 year old fathers of two. I know I shouldn’t’ be worried about what others might be thinking but I am and probably always will - comes with the territory of being human. To be clear, it’s a fleeting concern, all it takes is a few long walks back to the car on a bad day to remind myself why we got the placards in the first place.
I’ve talked a lot about how I am at peace with having MS and will continue to do so but where I’ve had difficulty reconciling myself is how little is known about MS in the medical community. What they do know has come a long way to be sure and I’m excited about the prospects of what might be on the horizon (oral drug, instead of daily shot…treatment to reduce the sclerosis I already have, rather than only preventing additional sclerosis going forward….a cure) but what is so damn frustrating is that I can’t even get a clear understanding of WHY. I have my theories and I’ll get into that in another post but all I know is that my body is fighting against itself and the bad guys are winning. This is why I write. This is why I walk. This is why I ask for you to help me and my team, Comfortably Numb.
Almost 400,000 Americans and 2.5 million individuals worldwide have been diagnosed with MS. That’s interesting to note if you like numbers or are into memorizing statistical anecdotes but it doesn’t really tell the story. 2.5 million people in this world, most entering the prime of their life…while boarding a plane for their Honeymoon, or as they take five hours on a Saturday to put together a baby crib, or as they eagerly accept a new position with more responsibility at work to support their family or just watching a football game with some friends…as they enjoy these special moments, their body stops working the way it is supposed to. Maybe it never did work right, maybe tomorrow everything will return to normal or perhaps tomorrow your life will be turned upside down forever if it isn’t already – you just don’t know. Odds might be this, or that or who the heck knows but all each and EVERY one of the 200 people newly diagnosed with MS each week think is please, please, please somebody figure this out.
Will the money I raise lead to a cure? Probably not. I’m realistic but you know what would be nice? Knowing if there is anything, ANYTHING that can be done to prevent my children or any other person on this Earth from ever getting this disease again – because I am NOT at peace with leaving a world behind to my children that does not have this disease in check, or even cured. I ask you to help me.