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Friday, November 20, 2015
Well, yup, that’s my lesson for today. It applies to life, of course, but it applies to running and all other things as well. I am not very good at excising the bad … no, I like to mull around in the muck, feel bad for myself, second guess things, beat myself up for not ‘seeing it coming,” or just be down and act like a victim. If it wasn’t for my coach when I was still racing, I would not have made it to Olympic Trials; if it wasn’t for my agent, I would not have run the pro road circuit; if it wasn’t for my husband, I would have listened to all the snarky comments, internalized them, and then lost every race I entered. But, those things did not happen. I did run in Olympic Marathon Trials; I did run the road circuit and my profession on my tax return was professional athlete; I did win races and break course records and snag a silver medal at nationals and get top ten world rankings several years.
I would have talked myself into failure on my own. I am still like that now. It takes very little for self-doubt to creep in and slam me in the head. As my husband tells me all the time, nothing I do is ever good enough. He also points out (and this one is very timely today) that no matter what I do and what I decide is the correct action or path, someone is going to disagree, sometimes to the point that they become angry and maybe even enraged. But, I must make my decisions based on my understanding of what being a responsible adult involves. I am not always right. Nobody is. But, I do the hard things that other people turn their backs on out of fear and I always try to protect the underdog. So, once I get over the shock of being lamblasted for doing the adult, responsible, correct thing, I listen to Bob, step back, and think, “yeah, I can go to bed with a clear conscience because I did the right thing, hard as it might have been.” That’s pretty much been the theme of the week this week. It makes dealing with the aftermath of aseptic meningitis tough, it makes dealing with the medication- and disease process-induced anxiety attacks very difficult, it makes it very, very hard to deal with some new, bad, and significant health news.
In a very unusual step for me, I have actually reached out to some people this week for help. WOW! Yeah, I almost never ask anyone for help with anything. I always feel a deep obligation to help others, but I never feel like anyone owes me anything in return, so I would never dream of trying to call in favors – I don’t look at helping people as packing away favors for the future. My grandfather always said that you help people because it’s the right thing to do. But, this week, the bad news piled on top of the bad news, combined with other ridiculousness, and I have had to ask for help from some people. I am really not trying to be cryptic or anything, but some of this involves other people and I do not want to share their problems in such a public format even if their problems have a direct impact on me. I’ll stick to my own stuff to be fair to others.
So, the point of this post is that I have decided that one thing I desperately need to do in my life is cut out the negativity. (1) I need to get rid of people who create problems for me. (2) I need to find a way to shift my thoughts from worrying about health problems to focusing on the here and now (and I need to come up with some good here and now things). I found a show on TV, a new one, called Life in Pieces. I watched it last night and it made me laugh out loud, deep belly laughing like I haven’t experienced in a long while. I need to find more things like that. (3) I also find that aerobic, moderate, but lengthy bouts of exercise help tremendously. I know that there is a chemical basis for it and I suspect that it has something to do with altering the problem with glutamate receptors and GABA deficiency and all that technical stuff that this disease involves which cause me pain and coordination problems. I am going to try to make a jogger assistant thingy sort of like a baby jogger, but less obvious looking and centered better for my own coordination problems … and, I’m going to hope that it can help me get back outside to run. I need to pick out the right person(s) to help me create this thing that I have drafted the plans for, taking into account everything from weight-force to navigability to, well, everything I can think of. I need to find someone who knows both bikes and welding and ergonomics. Yeah, no small measure, but I have some ideas. Meanwhile, I am trying to gain some strength by getting on the treadmill, holding onto the bar with at least one hand, and doing the best I can. It’s defeating most of the time, but I’m trying. I can do the elliptical, but I am still way down on the intensity level that I used to be able to do. The problem, oddly enough is not fitness, but rather it is that I lose the ability to keep my legs coordinated and risk falling. My quads will lock solid with no warning. Well, every now and then I can feel it coming on, but usually it is totally unexpected. My stride length is so short now because of the overall stiffness, even though it doesn’t feel like stiffness. It’s weird; it’s hard to describe. Anyway, I am hoping that creating this assistive device will allow me to get back outside more often and more safely. Fingers crossed! I need to start by making a prototype sort of thingy. Oh well, enough on that!
The good news of late is that I AM NO LONGER THE ONLY DIABETIC TO HAVE RUN AN OLYMPIC TRIALS QUALIFYING MARATHON!!!! Nicole Michmerhuizen won the Indianapolis Marathon on November 7th and finally, finally, finally, after over 16 years, another diabetic runner has done the big deed! I will do everything I can to get out to LA in February – maybe I can have my assistive jogging thingy built by then and actually run something recreationally. I think they still have the regular people’s race that weekend. And, to sweeten the pie even more, I think Sofie Shunk is going to get a qualifier some time in the next year. She ran her first marathon in 2:52 and has not been a big distance runner yet. She has awesome 10K speed and that is a must for a good marathon. In retrospect, I wish I had worked harder on my 10K speed. So, it is just an amazing running environment for me over the past few weeks despite being basically disabled as a runner myself. I ride my bike from time to time so that I get to see the routes I used to run; I have a special seat and it prevents the pain from the bone marrow edema, so I can see my special places! I never realized how important that would be. I’m starting to get over the vanity problem with not being the same runner-me that I used to be. Don’t get me wrong; it still bothers me, but I’m progressing on that front. What I am not progressing on, though, is how badly all of this has affected my ability to work. The unpredictability of muscle spasms/contractions/seizures powerful enough that they have broken bones in my sacrum and pubic rami make work-planning a near impossibility. Add to that the increasing cap for student loads in courses and I just cannot get through the workload. It is a sad reality. From my very first college course, I wanted to be a college professor. I achieved that finally and now this. It’s a roll of the dice sometimes I think.
Well, at least the great news on the running scene with Nicole and Sofie has made me so very happy that I’ve been able to handle some of the other shit that has come my way recently. I have good contacts in the diabetes community, so I hope that some of the problems I am having there can get solved or partially solved or something like that! Anything! I have some pretty great friends, too. Of course, I have some people who apparently hate the shit out of me, but what can you do, right? At least I have a clear conscience and Bob keeps telling me that is the most important thing when it comes to people. It’s funny that my grandfather used to say pretty much the same thing. I am more and more amazed at how smart my grandfather was even though he was a simple Northern Ireland Catholic immigrant with very little education. He knew people, though, and he was a good person. He was a disciplinarian, though, and he once beat the hell out mine and my brother’s bums for diving off the porch of the second story flat into my uncle’s boxwood hedges below. I remember my dad telling me that he bit my grandfather once when he grabbed him by the arm and my grandfather bit him back! He was a character!
Well, I have a little over a month to decide whether I have the guts to try another round of IVIG infusion therapy (it’s kind of like immune system chemotherapy) after the bout with meningitis this last time. The neuro team has all kinds of ideas about how to improve my chances of NOT having that happen again, but wow I cannot even begin to portray the pain involved with that. It was the kind of pain that made me a puking machine. I couldn’t see with even the slightest bit of light. The abdominal seizures were awful, but at least it wasn’t my back this time (the back is always worse). So, I have some time to try to build up my courage to give it a try again. I really don’t have any other options, though, because this is the only thing that has worked to slow things down at least a little. The only other option is a chemotherapy that completely wipes out my original immune system and then a stem cell bone marrow transplant to give me a new immune system. Besides the months I would be hospitalized at Northwestern in Chicago, in isolation, I would have to pay out of pocket … $400,000 out of pocket. So, seeing as I do not have $400K laying around, I guess that won’t be happening. I’m sure that some people would think we could come up with the money but we can’t. It’s funny, you know, Bob grew up with parents with 6th grade educations who worked two and three jobs to make ends meet and he worked his ass off to make something out of himself … and he did, wow, did he ever! And, I came from a family that had come to America penniless, through Ellis Island, and everyone embraced the value of education, pulling the entire next generation up into a solidly middle class status … after starting in the ghetto in Paterson, NJ. I thank God for the example set by my extended family and nothing was ever handed to any of us; we worked our asses off for every bit of where we got, so when someone tells me that I don’t understand their difficulties … oh, yes, yes I do. I think my family is the epitome of the American Dream and so is Bob’s. I often think about my Aunt Cele and I hope that I have made her proud by getting my doctorate. She tried and got within the defense of her dissertation and then was told that she wouldn’t be allowed to do it. Similar situation, slight differences, but I persevered and I just look up and say, “this one was for you, Cele!”
Okay, now that I have waxed philosophical for way too long (avoiding the student emails I need to get to), I will sign off for now, feeling a little better! Sometimes this kind of thing can be cathartic in a way, helping set everything into a more proper perspective.