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This post is written somewhat stream-of- consciousness style. I have had two streams in my life running parallel to each other the past few weeks. I’m not sure what one has to do with the other, but they somehow feel connected…at least to me.

***

So a few weeks ago I tweaked my right knee again. I’ve been trying to ignore it, thinking that if I run more slowly, if I run more lightly, if I stretch more regularly, the pain will eventually go away. I’ve been following a training schedule for the upcoming October 3rd Smuttynose Marathon, and my rest days have helped, but honestly, after every run lately, I battle with varying levels of soreness.

***

Over the past several weeks, autism has raised its open hand on several occasions and slapped me pretty hard in the face. Every time it did, as much as I tried to put on a brave, happy face, it hurt. A lot.

I have, for the most part, long been the happy-go-lucky member of my family. As a kid growing up, I just kind of rolled with the punches. Now, with a family of my own, I still am the one who stresses the silver lining in any situation. I am the one who emphasizes the positives and ignores the negatives, almost to a fault. It’s not always easy, but I work hard to remain positive in just about any situation.

Even when autism slaps me in the face, I will often turn the other cheek and smile. Even when my Brooke goes to hide in the bathroom for 25 minutes, shredding a plastic bag meant for her wet bathing suit, because both the visual and auditory stimuli from a camp activity is overwhelming, I say, “well, at least she’s using her tools to remove herself from the situation instead of having crying fits like many of her typical peers.”

Even when she goes to a birthday party for one of her classmates and just can’t seem to appropriately break into the social interaction of several of her friends, awkwardly trying to insert herself and ultimately failing, I say, “She’s socially motivated! She’s not shying away!”

See? Silver lining – quite possibly augmented with a dose of mild denial. Though denial may be the wrong word. I am not in denial of the fact that my baby girl has autism. Shoot! I’ll tell anybody who will listen about it. But maybe I’m in denial about some of the aspects of her autism that affect her life.

I have never been one to dwell on the negatives. At least, not on the outside.

But I’m tired. I try not to show it. I try to re-frame it. And very often, I convince myself everything is going to be all right – even when things look bleak. But those slaps get harder and stronger. As she gets older, the gaps become bigger and more noticable. My attempts at smiling have become less genuine. The tears that I shed in private when no one is looking have become more common.

I wonder and worry about the future (both immediate and more frighteningly, distant) of my little Brooke.

***

On Tuesday night I attended the Kick-Off for the Autism Speaks Boston Walk. Don’t worry. I’m not here soliciting donations (that’s the topic of another post). The Kick-Off is meant to pump up the walkers as they get ready to shift their fund-raising into high gear, usually done with inspirational speeches from parents and politicians. I think they did a good job of that, but for me, it was Autism Speaks’ President Mark Roithmayr’s speech that struck a chord with me. He talked of the scientific research Autism Speaks funds and the recent findings that are helping to unlock and solve this puzzle we call the Autism Spectrum. There may never be a “cure” so to speak for autism, but the more scientifically based knowledge we have, the greater we will understand this disorder. The greater our understanding, the better equipped we will be to help our autistic sons, daughters, siblings and friends. It gave me renewed hope.

That hope was buoyed by news of the passage of an Autism Insurance Bill in both the State House and Senate (unanimously I might add) and a video-taped promise by our governor that he would pass the bill if it made it to his desk. Awareness is making a difference!

***

Yesterday I had the great pleasure of meeting a scientist who has been working in the field of autism research for over 35 years. She was delving into solving this puzzle long before most people had even heard of autism. Dr. Helen Tager-Flusberg spoke to a small group of us who have been touched in some way by autism. We had been invited to see firsthand where the dollars go and how they are used. She spoke of her ongoing research, concurrently studying the receptive language of non-verbal children and the infant siblings of children with autism. Her enthusiasm, even after 35 years in the field, is infectious. She is still eager to learn, to discover. I could feel myself get excited for the research she was doing, thinking, “gee, I wish I were 22 years old again so I could apply to graduate school and come work with her!” But the most joyful part of my experience of meeting Dr. Tager-Flusberg and touring her lab, was seeing the fire and energy of those that worked for her. These young women are the future of autism research, they are excited by what they are doing and they quite obviously knew their stuff.

It was somewhat bitter-sweet to see this because much of what they do will more directly help those that come after me and my little Brooke, but there are bound to be some things that come out of their research that will help all people on the spectrum, whether it is directly or indirectly.

I walked out of the meeting with renewed strength. Autism will continue to takes its swipes at me, of that I have no doubt. The private tears will continue to be shed, but my resolve to help has been hardened. I can feel that resolve bleeding into other aspects of my life as well.

***

I have long compared our family’s personal journey with autism as a marathon, not a sprint. This was long before I started running regularly. A year after Brooke started receiving therapies to help her cope and communicate better with the world, I said that we were no longer crawling a marathon, we were walking. We still have a very long way to go, but we are walking. Her progress has been phenomenal, but it has had its up and downs. We will often take 3 steps forward, 4 steps backward and then 2 step forward again. A painful but ultimately positive path.

***

What does this have to do with running? with my preparation for Smuttynose? With my troublesome knee?

2 days ago, I sat looking at my knee. I’m pretty sure it’s not a joint issue per se. I pulled, possibly ripped, something over a year ago in my hamstring. Something actually popped behind my knee. The doctors never found anything, but it’s never been quite the same. 3 marathons, 4 half-marathon and several shorter races later, I am faster and stronger overall, but my knee hurts. 2 days ago, I wondered how I was going to deal with this. 2 days ago, emotionally hammered by the recent trials of autism, I wondered what I was doing. Why was I running? Smuttynose is 10 weeks away. New York, 15.

After the event of the last two days and speaking to Mark and seeing his enthusiasm about my running for Autism Speaks this November, the purpose became clearer. I need to do what’s right to be ready to run in October and November. Maybe these last few days were about not having to be in denial to have hope? Maybe one doesn’t need to be Pollyanna to be positive? I don’t know.

What I can tell you is that after the Kick-Off and after my tour of Dr. Tager-Flusberg’s laboratory, the pain I have been ignoring (both autism and the knee), have my full attention again. The focus is back. I’m going to take a week and really let the knee heal through real rest, massage and stretching. How else this is going to manifest itself over the next 3 months, I am not sure, but I want to thank Mark Roithmayr, Erica Giunta, Kelley Borer, Christine Pecorella, Dr. Tager-Flusberg and the rest of the Autism Speaks team for helping me regain my footing.

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Manchester Marathon 2009

I started running a year ago. Four months ago I decided to run a marathon with the hopes of qualifying for Boston. I was training to run Bay State in Lowell, MA with the hopes of running a 3:20:59 or better to BQ. Injury interrupted my training over the last 6 weeks and I was forced to stop running for four weeks, pass up Bay State and run the more challenging Manchester Marathon instead two weeks later. My last long run (19 miles) was 6 weeks before Manchester and I started running again 12 day before the race, never running more than 7 miles in those last days.

The hills were killer…felt like they went for miles at times…though they didn’t really start getting to me until about 15. The thing I think what really killed me though was that I didn’t hydrate enough (both before and during) and the pacer I was following went out at a blistering 6:30 pace…he was the 3:25:00 pacer…I’m thinking I’ll follow this guy for 18 miles and then crush it at the end…instead he raced out and mentally I was screwed.
“Dude, you think 6:30 might be a little fast?”
“Huh…yeah, I guess I better slow down.” Ya think? I tried slowing down, but I kept worrying about slowing down too much. Lesson? Don’t follow the pacer…you know what’s too fast or too slow. You’ve been training for weeks. If you can keep your adrenaline in check, you’ll know. ***and just in case I can’t, I’m bringing my iPhone with Runkeeper running to tell me my pace every 1/4 mile!!!***

All that said though, by mile 3 my head was back in it and I was cruising, feeling great. I wasn’t thinking about my depleted stores of glycerin, nor was I thinking about sticking to my original game plan. The pacer had taken me out fast and dammit, I was gonna try and keep a decent pace!

Hydrating was tough. I kept getting water up my nose…I learned three days too late the art of the crushed cup. When I hit the half at 1:35, I was pumped, but going over the bridge to the western part of town I hit a huge, HUGE headwind and hill. Knocked my pace down 70 seconds or so. Got back on track on the next mile, but I think the damage had been done…I started thinking about the fact that I was doing this all over again…it didn’t help that at 13.1, most of the people I had been running with peeled off to finish their half marathon…we went from a group of 8-12 to 3…that was disheartening…suddenly it was lonely…which is weird because I run alone usually. I’ll very happily run 14 -18 miles alone early on a Sunday morning, either enjoying the peace and quiet or plugged into some pounding music. Truth is, after 13.1 miles with complete strangers, battling the same hills, a bond is formed. I wanted my unit to run with me…instead I was very quickly a unit of one. …14 was a killer and then 16 hit me like a ton of bricks…I trudged along to 20 at a miserable 9:00 pace not realizing that the wall that hit me at 16 was nothing compared to the pain that was waiting for me at 20.

I kept thinking, “just make it to 20 and then drop the hammer. It’s only a 10K at that point. Shoot! It’s only 2 5K’s. What’s 3 miles? Nothing! I can do 3 miles hungover! I still have an outside shot at 3:20:00. Just make it to 20 and then drop the hammer. Put the foot on the gas!”. I continued to push myself along in this manner. I knew the minutes were ticking away and that my chances of qualifying for Boston were slipping away, but dammit if I wasn’t going to make it close!!!

Almost to the marker, my quads, both of them, froze. I came to a dead stop and couldn’t move for about 2 minutes. Tick! Tick! Tick! Time was slipping away. Boston was disappearing into thin air. My thoughts of a 3:10:00 first marathon were long gone at 16. Now 3:20:59 was crumbling. I wondered if I could finish. My legs wouldn’t bend…at all!!! I thought about quitting. I thought about my family waiting at 24.5. I was suddenly overcome with a sense of peace regarding Boston. All that training…all of the hard work would now have to be summoned up to finish this race. I slowly started walking like Frankenstein’s monster. After about 100 yards I could bend my knees just a little…another 200 yards and I broke into a very poor excuse of a jog…from that point on it was will power and nothing else that was moving me. Off and on the legs would freeze and I’d have to stop. It took me 20 minutes to get from 20 to 21. At 24.5 I saw the family, dug deep, put on a smile and broke into a jog. I went around the corner knowing I had about 1.2 to go…I’m screaming at my legs to bend, but I’m struggling. As I turned the final corner I saw the clock…I had found peace in the fact that I wasn’t going to qualify but I saw the clock…it said 3:54:14…at that moment I found one last gear…I wasn’t coming in over 3:55…I actually ran the last 50 yards or so…clock said 3:54:46…net time ended up being 3:54:04…next time I’m eating more bananas to keep the potassium levels up…2 days later I wanted another shot at it…trying to convince the family to head to Disney for the Disney Marathon!

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