Tuesday, December 6, 2011

Running toward my problems

I do realize that there is no consistency in the type of posts I write for this blog. To be transparent, I really wasn't sure what type of post I would have outside of the New Balance stuff. I'm discovering it as I go. Maybe you enjoy the light hearted posts. I like them too. This is not one of those posts. This blog is a personal blog and this post is very personal and not entirely easy to write. I'll let you be the judge of whether it is easy to read. If you prefer to stay with the light hearted stuff, that's OK, just skip this one.

I was reminded today that I have another reason why I run and I didn't share that when I brushed on the topic in an earlier post. Today I was emotional. I was upset and had that feeling where you don't know where to turn. That feeling of being so unhappy with your thoughts that you want to crawl out of your own body to escape them. I wanted to be someone else or walk away from it with no memories. I battled with that internally for a while and then, I ran.

My daughter Maggie (7) has a very rare blood disorder. So far, it has turned out to be undiagnosable. She has had it for about 3 years now (I think). Maybe it is longer. I deliberately try not to think too much about how long it has been. I'm not from a medical background and it's frustrating for me because I don't understand half the stuff the doctors talk about. My wife, Maureen understands it. She is a Certified Nurse Midwife but even hearing her talk about it is like listening to Charlie Brown's mother. What I know is that Maggie is not producing red blood cells properly. They are breaking down in the bone marrow and nobody knows why. She has had multiple bone marrow biopsies that gave confusing results and has received treatment at Children's Chicago as well as The Cleveland Clinic. She has even had her genome sequenced by researchers at Harvard as a part of a study at Children's Boston. The outcome? Nothing. Zilch. Nobody has a clue. In the beginning, they thought she was on the road to leukemia. Now, they have no idea. Maggie needs blood transfusions every so often to get her red blood cell count back up. It never quite gets to normal. She is such a great kid with an old soul. I hate to say it but she is the only one of my kids who could have coped with this. She handles everything that is thrown at her and she is even empathetic to others in the process. A great example of that was when she gave a hug to a nurse who hurt her with an I.V. because she said that "the nurse felt bad. she was just trying to help me". She is often more mature than I am about the whole thing. She is not a frail kid though. My wife likens being physically exhausted all of the time to training at altitude. She is really strong and manages physical activity in short bursts. It's interesting to see behavioral coping mechanisms like that. If you didn't notice her do it, you could easily mistake her energy level as being normal. When Maggie's red blood cell count is depleted, she becomes extremely exhausted, her personality becomes frazzled, her voice breaks, she looks ghost white, she is black under the eyes, she has toilet accidents and develops a heart murmur, etc. It's not an easy thing to watch happen to your child over and over again. It's also not easy to sit there with her getting transfusions with all the other poor kids around you getting chemotherapy. Hats off to Children's Chicago. They do a great job of keeping that unit really positive. Kids are amazingly optimistic—much more so than adults.

My Mags this summer in Michigan
So, Maureen and I are in this weird ultramarathon-like limbo. There is no diagnosis and nobody has any ideas of what to do next. The only thing that we haven't tried that they have talked about is a bone marrow transplant. There is a chance she could die and there is no guarantee it will fix the problem. There is no way we would take a chance like that. So, we wait. We try Eastern Medicine—why not? We continue the limbo. The feeling is terrible. If you think about the possibility of leukemia showing-up, you feel guilty about thinking dark, negative thoughts. You feel it your duty to remain positive. If you treat it casually like a routine, you start to feel guilty that you are not being vigilant in the event something bad shows up. You want to feel like you are running out ahead of her and not leaving her out there at risk. In short, you just can't win. It's a roller-coaster of an experience. Trying to convey these feelings to family members is impossible. They understand having a diagnosis and can't appreciate what's involved in not having one. They don't know what to say or do. Some even act like if there is no diagnosis, there is nothing really wrong. That's very frustrating. All of that would be complex enough but then we have to deal with how to talk to Maggie about it. We have chosen to tell her the truth and be honest without any histrionics. We don't allow her to use it for sympathy to get out of gym when she doesn't feel like it, etc. Even things like that can be a tough call though because there are days when she is just too exhausted to run in gym—even for short bursts. Generally, I think we have dealt with it pretty well as a family. I'm proud of us.

Dealing with the emotions of it can be tricky. My wife is often very upset about it. She has a sleep disorder and I think this has become a big part of it. I feel guilty but I honestly don't want to talk to her about it as much as she would probably like to. I manage to suppress it in my own way and I don't think I can do that if I am exposed to my wife's real emotions more often. It's really selfish of me, I know. It's purely self preservation. I do the family no good if I fall to pieces on them and as the primary bread winner, I have to stay in the game. Maureen and I could both probably use a professional to talk to. Just writing this is therapeutic. Right now, my coping strategy is to do some semi–controlled emotional explosions like a Thanksgiving speech at my in–law's that will go down in family history as the most tears spilled. I'm honestly not sure how to have a healthier way to deal with it. As I am writing this, I realize that what I am doing isn't really healthy. As her father, I feel like I should fix things for Maggie. At one point when I became frustrated with the waiting, I took things into my own hands and through a bit of luck, a colleague of my brother in–law connected us with a research team at Harvard. After they had sequenced a part of all our genomes and turned up nothing that could help her, I felt very defeated. Right now, I am having those feelings all over again. Who else can we take her to? Who can tell us what this is? Who can tell me that she is going to be fine? I want so desperately to be told that she is going to be fine. No medical person has been able to tell us that. I tell myself she will be. I pray that she will be. I pass on every positive piece of energy I have to that cause. It's not the same as being told by a medical professional "it's all over. she is going to be fine". It's just cruel.

After Maureen and I talked about Maggie's situation today, that cruelty hit me again. I was in that danger zone and on the brink of an emotional explosion. As Maureen went downstairs, my mind was going to dark places. I had a brief moment when I thought about Dean Karnazes taking off over the Golden Gate in his boxer shorts when he had a life crisis. What would I do if something happened to my little girl? I would go bloody berserk. I stopped myself at that thought and I chastised myself for thinking such a horrible thing. I had already planned to run. I had my gear on. I opened the back door and ran. As I headed down Western Avenue, it was like those scenes you see in movies where people are taking heroin. At first I was tearful and taut. I felt anger and I had to stop the temptation to explode into a sprint. I stuck with the pace and finally I was there. Ahhh! My face loosened up, my jaw slackened and I became expressionless. I felt like I was floating along for 4 miles. The gray sky, the 34°C, the dreary city streets and the drizzle didn't matter one bit. It was euphoric. I needed it.

Here's the thing about my run today. I don't physically run so that I can mentally run away from things. I feel that I run toward them. I run inside them. It's easier for me to think about Maggie's situation when I am in that running state of mind. I feel like I can deal with it. I feel like it is lighter and more manageable. I feel more positive about it. In fact, I had a little moment as I was coming alongside Humboldt Park where I daydreamed that Maggie (on older version) and I were running a trail side-by-side on a very long run in the sun. It was a very good feeling. The best of feelings. I told myself that once we get this blood thing dealt with, she could make an awesome distance runner if she is interested. She has a lot of self discipline and she knows how to overcome the limitations of her body. Every day for her is like an ultramarathoner standing at the starting line of a 100 mile race but with the disadvantage of having run 50 miles already. I so admire her. When I returned to the house after my run, I felt completely different. Nothing about the situation had changed but I had changed. I felt positive and motivated to talk about what we could do next. That's no small gift. It's amazing what a quick 4-mile-run can do.

9 comments:

  1. Maggie is amazing. Hugs to you all.

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  2. Two things. Simon, I have a mantra I chant to myself when the running is tough--or when running is by far the easiest feat of the day. It's 'Dig in. Dig in.' Dig deeply and get it done. To me, they are the magic words and have nothing to do with working through a side cramp or a tight achilles. You've done that today.

    Second, to Maggie. Maggie WE are the ones who need YOUR help. Not the other way around. Help us see the world as you see it, because you're stronger than all of us combined.

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  3. What an amazing post, Simon. Keep running, keep writing and keep doing all the things you do for your wonderful little Maggie. All my good wishes are coming your way!

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  4. Simon, inspiring post. Hug Maggie when she goes to bed tonight. Keep on running. It clears the mind, makes you feel good. Non runners don't get it. Just keep on running. My mantra is, "Slow and steady, steady and slow, that's the way we always go!"

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  5. This is a very moving post, Simon. Nic sent it to me and I'm glad she did. It is inspiring. Marnie is right: Maggie is way stronger than most of us, I suspect. Hope to catch up with you some time soon. It's been a long time since I saw you. Keep well. Keep running.

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  6. Its amazing what a positive attitude can do to an awful situation....keep running! Its like a miracle pill!

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  7. Simon...dear Simon. I sit here 2000+ miles away with tears streaming down my cheeks. I can close my eyes and recall the whole night. Getting to your old apt. Scout watching her mama labor...walking down the block in the dark with your laboring wife. Driving to hospital thinkin we would have a baby in 3-5 hrs...Nope. She tricked us. She has always been slow and methodical. Wanting her mamma to go through labor in every way...land..tub...bed..."tasting purple"...on a ball...in a chair..on a ball in the shower. Then she turned and to the earth she was born. Your baby. She was there...I swear she was named Lucy first but no...Maggie was born. Miss you all. Kiss the kids and my dear friend Maureen for me.

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  8. Great post Simon! Maggie is such an incredible little girl!
    As for the running part, I'm totally with you. A few years ago, I really tried to get into yoga because I thought it would be good for me mentally. Much as I tried, I always hated it. Then one day after a good run, where I didn't say a word, didn't listen to any music, and just let my thoughts come and go freely, I realized running IS yoga for me...mentally at least.
    Anyway, I'm enjoying your posts. Keep writing and keep running! Hopefully I'll be able to join you for some runs again next summer once I get back in shape!
    In the meantime, I'll keep praying that one day you WILL hear, "It's all over. She'll be fine!"

    -Stephanie

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  9. Thanks to you all for your love and support.

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