2 Years Ago
In the past 2 weeks, we’ve had the 2nd year anniversary of the adoptions of both our kids. It seems odd to celebrate something so mundane and taken for granted in our lives. By that I mean they have been our kids for longer than they have been our adopted kids. They were our kids the moment they stepped in our house. There acceptance into my life as my kids is one of those “of course” thoughts, and my taking for granted their adoptions shouldn’t be taken as anything less than total acceptance. Each of them has brought so much into my life, and both of them continues to teach me.
A: The example I almost always use is when she taught me we can make it through most anything. The first weekend I was taking care of her alone was before I was diagnosed with MS, but I was flaring. I had terrible head aches which woke me up and only went away with sleep, but I wasn’t terribly worried because she was so low maintenance. However, I woke up and my headache was accompanied by blurry sight. I went back to bed hoping it would be resolved when I got up, but 9 a.m. rolled around like it does everyday, and it was time to take her downstairs for her food and meds. I was worried because I couldn’t fill the syringes up accurately with blurry sight. As I carried her down, she put her hand up over one of my eyes, and I realized I could see if I closed one eye. I alternated eyes all weekend, and I was proud we had been able to overcome one of life’s little obstacles. Just stick with the ones we love, and everything will work itself out. (I hope)
O: I learned the importance of humor in dealing with sadness and frustration. When he came to our house, he cried 80% of the time. He was very difficult because everything we did or didn’t do caused screams in his paralyzed vocal cord voice. Finger nails on chalkboard would have been easier to stand at many points, and it just went on and on. However, we discovered the antidote, laughter. I have never been so happy to see a boy laugh from being tickled. His face radiated mirth. To this day, he laughs when something hurts him. It’s not very appropriate, and it’s frequently maddening too watch him laugh off scoldings or things that hurt him which would make most people stop whatever is hurting them. It’s hard because as many times as I tell him, “pain is our body’s way of saying ‘Don’t do that!'” nothing seems to slow him down. Still as I deal with MS and pain, I can’t help but look at his drive, at his resilience…and in moments of honesty I may admit laughing at pain often works.
Probably the most important things they taught me all fall under one category, “How to be an adult parent.” It may be odd, but I’ve learned more about my own learning styles and beliefs from watching them reflect back to me in their eyes and actions than I ever thought possible. I’ve learned a huge part of being an adult parent is learning to enjoy the small victories and the inconveniences they may spawn (anyone who has potty trained a kid knows the likes of which I speak). I’ve had to try to learn to tolerate and occasionally cultivate childish exuberance. I’ve learned so many of my notions coming into parenting were off base, at least for my kids. I bet I’m only right about half the time even now.
Thanks for 2 years of mostly ups.
On the other up side, I ran a 15k this weekend. I won’t say it was easy, but it did make the runs I’ve been doing and the stairs I’ve been climbing seem worth it. 1 hour 47 minutes was my finish time for an under 12 minute mile pace. We certainly were not quick, but after a 2 mile walk to and from the course due to traffic accidents, I am claiming to have at least unofficially hit my half marathon goal. The last mile running was far easier than the first. In fact, it took more than 2 miles for my muscles to loosen up. Even with my claf cramping at the 8 mile marker, the last mile which was almost all up hill was faster and easier than the first.
On the “I don’t know what to do with this comment side,” my wife told me the next day she hopes I’m not planning on running another one of those. I said “not any time soon” because I won’t be able to run any more as winter is upon us. I figure this is an argument for another day. I know she says this evaluating what she perceives of my pain. I don’t know how to tell her I don’t actually feel terrible pain wise, and I have a lot days which hurt worse. I need the targets to motivate the day to day, and the targets have to be ones I view as stretch goals. I need the day to day even if the end part slows me for a bit. Without the day to day, the slow will come more quickly and with more pervasive finality.
Last note, I was happy to see there is an oral medication (BG-12) in phase 3 trials which actually seems to slow the progression of symptoms measured as disability progression. Asfar as I know it would be the first to do so in a measured enviroment.
We have drugs which slow the accumulation of lesions, and I am on what appears to be the strongest of those (Tysabri). Make no bones about it, Tysabri has done wonders for me, even allowing me to get to a point where I can start running. However, the symptoms continue to arrive like unwelcome ants at an outdoor BBQ.
I am hoping the drug works out, but I still have some questions. The first of which goes back to the lesions and symptoms. I am less convinced about the charts showing lesion locations and symptoms associated with the locations. As more research comes out, it seems the lesions may be a vascular issue in the area for some of them, not necessarily a blockage as sometimes it’s just a webbing effect changing flows. I wonder more and more with our body’s ability to reroute brain function (thinking of young children who have hemispherectomies) , if flares are traffic blockages forcing overflow to other paths. Sometimes, the messages go through fine. Other times they are delayed or altered by their change of route. The worst is when the over flow causes more generalized damage essentially digging a bottomless pit from which the signals never return. I think of a highway rerouted through a farm field after a rain where the traffic actually makes it impassible for those behind. I think about this model when wrapping my head around new symptoms occurring without new lesions showing on an MRI. Maybe the outage has been there for a while, but nobody ever put the sign up saying “go another way!” to stop the signals from entering into the now bog like farmland. Is this drug not only going to make better manage the existing neuro pathways, but also put up higher guard rails to prevent the surrounding damage caused by back ups? I and many other MS patients can only hope maybe this drug attacking MS from another direction (suppressing Cytokines) is the leap forward MS research has needed.