Change of Pace

Originally this blog was titled "Running Commentary" and it was mostly about running, but also a lot about my life as a single, professional woman in New York City. I wrote a bit about dating, work and travel and tried to tie it all in to my essential identity as a runner. Several things changed in my life and priorities began shifting and it made sense to give the blog a new name when I moved it to a new location. I was in a new relationship, working hard at getting a new job and really committed to seeing how close I could get to the Olympic marathon trials qualifying time. "Change of Pace" seemed fitting.

Several years later, my life has undergone far more changes that I could have possibly anticipated when I made that name change.

The relationship is still on, I got the new job and I came as close as I realistically could to the marathon time I wanted. Beyond that though, I left the new job after less than a year, moved to Missouri, pretty much stopped running altogether, completed a master's in photojournalism, had a baby and watched my mother's health decline to the point where she now has to live with me. And really, almost incidentally, started running again.

The good (new career path, baby) is fantastically good and the bad (Missouri...or rather, NOT New York and my mom's MS) is depressingly, sometimes devastatingly, bad.

So now, with hopes of getting back on track with the blog again, it will still be about running, but it will also be about photography and freelancing and parenting and care-taking and being a member of the "sandwich" generation. I'm also going to try to post pretty regular updates about how my mom is doing for friends and family to touch base in one place.

Lately, things have been tough for my mom. She really wants to be living on her own and often has trouble accepting the limitation that multiple sclerosis has imposed on her. She often expresses her opinion that she is capable of doing things that I know she is not, but it is hard to tell if she really believes she can do these things or is grasping at the power of magical thinking. I feel like I've seen a noticeable decline in her ability to express herself verbally, executive function, spacial relations and physical coordination. She hasn't seen her neurologist in Richmond since early in the year, but we're finally scheduled to see a doctor here on Tuesday, so we'll see what she has to say.

Okay. Enough on that for now. The next entry will be a little lighter, since I really do think it's a good thing that I'm running again. All this care-taking is hard on the psyche AND the body, so it's important that I keep myself strong. I've got goal races on the calendar and it feels good to actually be keeping track of my miles again, as paltry as they are at this point.

I hit 20 miles for last week, which is a pretty weak stat in the context of my old running habits, but for me right now, feels like quite the accomplishment. Just being able to knock out six (admittedly slow) miles is enough to make me feel like a runner again. The muscles are firming up, my energy level is higher and the mental break from all of the care-taking has got to be a good thing. Pushing Nathan in the baby jogger up some of the hills around here is quite the challenge, but I'm exceedingly grateful to the little guy for being such a content, mellow passenger. He naps through most of the outings, but he also gets lots of smiles and comments from the people we pass when gets in the zone and starts pumping his little legs like the future runner he is.

The plan right now is to run a local 5K at the end of this month to see what it feels like to pick up the pace a bit. Further out, I'm hoping to race a mid-October 10K and an early November half. I'll admit to misty-eyed dreams of breaking 40 at 40, but it's probably a bit unrealistic to envision that happening this fall. It's still on my To Do list though.

And speaking of my To Do list...I've spent much of the last few months feeling guilty about letting my mom's medical treatment slide, but we finally had an appointment with the new neurologist last week. It's stressful for my mom to go through some of the evaluative stuff since it really makes it impossible to sugar-coat what she's going through. For example, the doctor would ask her to repeat back a series of words. So the doctor would say, "apple, tree" and my mom would respond, "apple, tree." Then the doctor would say, "apple, car, tree" and, after a long pause and increasing anxiety, my mom might be able to come up with one of those words, but it would be obvious that the imprint of the series was already sifting away as if the letters were written in sand at the edge of the surf.

The neurologist ordered a ton of tests, just to be sure that there aren't any other physiological things going on besides the MS that we might be able to address, and referred us for some additional therapy. So now I've got her scheduled for a follow-up appt. with the neurologist, a CAT Scan, an ophthalmologist, a thorough physical with an internist, speech therapy, occupational therapy and physical therapy. Between all of those treatments, plus the trips to the vet for her aged dog Rudy and Nathan's pediatric visits....I really have to stay organized so I don't miss an appointment. Then there are trips to the salon to keep my mom's hair and nails tidy, weekly grocery outings and if I'm lucky, the occasional freelance photography assignment...I'm starting to really appreciate the irony of the title "Stay-at-home Mom."

Today I went with my mom to have her evaluated for speech and occupational therapy. As with the neurologist visit, it's just depressing to watch her cognitive decline demonstrated so clearly. In the course of day to day life, a lot of the issues can be ignored or at least explained away, but watching her go through the testing process and struggle to answer the most basic comprehension questions or complete simple coordination tasks makes it clear how much has been lost. I'd be incredibly angry about it all if there were anyone for me to be angry at, but there isn't, so mostly I just feel sad and defeated. Not to mention, overwhelmed, by the road that is still left to travel.

The occupational therapist took me aside to gently warn me that the root of my mom's physical difficulties was probably cognitive and therefore occupational therapy probably wouldn't help much. I pretty much knew this already, but we have to at least try some of these therapeutic approaches...just in case, right?

It was only two hours at the rehab hospital, but my mom seemed really spent and out of it by the evening. Part of it is probably the high temperatures, since heat is supposed to make MS symptoms worse.

The available therapies might have limited value for my mom, but I'm working on mapping out some better coping strategies for myself right now too.

1. I need to take better advantage of our health club's two-hour-a-day childcare service. I dropped Nathan off for an hour today while I trudged out a miserable four miles on the treadmill. I was glad to get the miles in, but it wasn't fun. Nate on the other hand seemed to have a jolly old time, not even bothering to look up when I left OR when I returned. He seems to have joined a street gang of other crawlers and they were all scooting around merrily dragging an assortment of brightly colored plastic lawnmowers and shopping carts.

2. A woman and her 20-something daughter are coming by for coffee tomorrow morning. I am ostensibly interviewing them as possible caretakers for Nathan, but it's also so that I can find someone trustworthy to yes, watch him, but also be here for my mom too. I think she'd be mortified to realize that I don't feel safe leaving her alone here for more than two or three hours, but I think she'll be okay with having someone here if they're officially sitting for Nathan. She has repeatedly offered to watch him for me, but as usual, I don't know if she really thinks she's capable of doing that or whether it's just her way of expressing that she would if she could. I reserved a canoe trip on the Meramec River as a birthday present for Jack, so I'm hoping that this works out and this woman (or her daughter) can hold down the fort while we take some badly needed couple time.

3. Thursday morning I am flying to Ohio with my mom and Nathan to celebrate my mom's birthday with my grandmother. Then my aunts are going to take over care-taking duties long enough to give me a long weekend in New York. I'm still half-waiting for this scheme to fall through since it seems impossible that I was actually able to plan it at such last minute's notice, but so far it's looking like it's really going to happen. I'm chomping at the bit to see my friends and stroll around Manhattan with Nathan and go for a run in Central Park....the real question is whether I'll get on that plane back to Ohio on Tuesday morning!

I almost couldn't let myself believe it was really going to happen until I was actually on the airplane to Laguardia, but I managed to negotiate a little break for myself, long enough to whisk Nathan off for his first trip to New York. We flew to Columbus with my mom for a family dinner to celebrate her birthday and then two of her sisters generously took over care-taking duties for the long weekend.

It was such a whirlwind of a trip that it seems a bit like a happy dream at this point, but I did get to spend some delicious (and much-needed) quality time with some of my nearest and dearest girl friends. What I didn't do, sadly, is run in Central Park...or run at all, for that matter. At least I DID make it into the park for a little bit, just to make a formal introduction to my child. I have suffered for so many damn hours in that place, it seemed like he should see it.

And now, here I am back in the land of eternal servitude and never-ending doctor's appointments. It's been too hot and Nathan's been sleeping too little for me to get in any running this week, but I'm still planning to try that 5K this Sunday. I'm just going to approach it as humbly as possible and tackle the first mile at medium effort (no peeking at the watch) and see how it feels. I'd like to come in under 25 minutes, but I won't jump off a cliff if I don't. If anyone tells you that I DID jump off a cliff, you can be pretty sure that I'm just faking my death and am most likely back in New York.

We are now scheduled to hike down Hwy 40 twice a week for the next month for physical, occupational and speech therapy. We had our first set of official sessions yesterday after the initial evaluative appointments last week. The therapists all seem very nice and patient and non-patronizing and my mom likes them well enough, but I still feel very skeptical that any of this is really going to help matters.

We also saw the eye doctor a couple of days ago, but since my mom has such trouble following directions and can't really keep her head still to check peripheral vision, there wasn't much he could tell us. Apparently she has some mild cataracts in both eyes, but her current glasses prescription is pretty good. Nothing really explains satisfactorily why she isn't able to read anymore, so our next stop is a neuro-ophthalmologist at SLU at the end of August.

The CT scan went fine. We'll see if there's anything new from that when we see the neurologist again in a few weeks.

Here's the take-away from each therapy session so far:

Both OT and PT sent us home with a list of exercises to do every day. Between the actual appointments and the exercises and the other doctor appointments we have lined up and an MS meet & greet dinner....I'm starting to wonder where I'm going to fit in my freelancing from here on out. It doesn't help that the Patch editor that I do most of my work for has accepted a job in South Carolina, so I'll need to start from scratch with someone new. Jack suggested that I go for the editor job, but I just had to laugh. Right now my mom IS a full-time job!

Tomorrow morning I'll get a little break from all this when I line up for my first race in more than two years. It's a wave start, so I figured that I'd start in the middle of the pack, but apparently a predicted sub-26 5K time is enough to put me in the first wave! It's going to be hot and humid, so I'm really going to try and stay conservative. (I can hear my college coach saying his favorite phrase, "Don't be a maniac!" in his Billy Crystal Long Island accent)

Whew, so that monkey is off my back. 23:34 is a far cry from 19:07, but I'm willing to make some concessions to the reality of a pregnancy and three years of minimal training. This particular 5K didn't give out age group prizes, but if it HAD, I would have been third, so that's actually pretty cool. It surprised me how slow the field as a whole was as compared to the Central Park running scene, but since I'm unlikely to be anywhere near my old race times anytime soon, I'll be able to focus on just trying to place on a more accessible competition level.

Despite the fact that the race was pretty miserably hilly, hot and humid, I was pleased to end up with some reasonably consistent splits. (7:38/7:27/7:46) Yeah, that last mile sucked.

Not much else to really say, especially since it's late and I'm wiped out. Nothing else on the race calendar yet, but since my mileage for this past week was exactly 5 kilometers, I think my goal will be simply to just get back to trying to train consistently.

The last couple of days have been rough ones. When we got back from the Ohio/New York trip, my mom seemed so much more alert and engaged. I noticed, Jack noticed and even my mom's occupational therapist noticed from across the room when we were there for PT last Friday. But over the weekend it was like all the air drained out of her sails and she's been really out of it. Physically, she just looks like the weight of the world is on her shoulders and she's very fragile emotionally. She is resistant to accepting help from me and even acts a little miffed when I persist in offering it. Actually, "miffed" would be a good thing. Instead she just slumps over and breaks off all eye contact with me. It's like somebody flips the OFF switch and the only one with the power to reanimate her is little Nathan.

I suggested to her that maybe the continuing heat wave is part of the cause, but we've really only been outside for brief periods of time. We tried to talk about the situation at OT today, but she kept "tuning out" of the conversation and tearing up.

I'm afraid that starting all of these therapies all at once might be part of the problem. I mean, it's not like we don't deal with the challenges that MS presents ALL THE TIME, but on a day-to-day basis, you just respond to what's in front of you and don't really give it much thought. Therapy requires that you break everything down into specific pieces and face each one head on, trying to form effective strategies for each stumbling block along the way. So I guess that it might just be too much reality all at once.

It's so hard for me to know how best to support and help her through all of this. My instinct at this point is to just fight back as best as we can, even not knowing if any of it will help. But if she's exhausted right now and doesn't feel like she has the resources to "fight" at the moment...then maybe my pushing her is the last thing she needs. I just wish she was better able to tell me what she wants and needs right now. So much of dealing with MS is already guess-work, it would be nice to know that I'm at least making these guesses the way that she would want me to.

With three sessions, twice a week, life has become all about the therapy routine lately. Jack sees it as an overwhelming addition to my routine and if anything, my mom seems worse since we started it. She's depressed by the harsh reality of facing up to all the things she can't do and insulted and angered by the simplicity of the tasks she's being asked to complete...a situation that's made even worse by the fact that some of these really elementary tasks are still pretty challenging for her.

She's expressed that she's really quite bored during the days here so I was hoping that maybe we could get to the roots of her difficulties in being able to read, but so far the eye doctor visit was inconclusive and the speech therapy exercises (looking at a drawing of an object and then identifying the word for that object from a list of two or three words) are too rudimentary. I suspect that the problem comes from difficulties with short-term memory and reading comprehension issues...both cognitive disabilities that I doubt we'll be able to do much about.

I skipped running on Monday morning because my mom seemed so down and out-of-it when I was about to go out and then skipped it again this morning because Nathan had another bad night's sleep and was finally snoozing soundly when it was time to load him up in the car seat at seven. The child's craptastic sleeping habits are definitely one of the biggest challenges I'm facing as I try and get back into a regular running schedule. It's just so hard to motivate myself to get up and beat the heat with an early run when I've been up to feed the kid every two hours all night long. I think I recall that Blake Russell struggled with nearly a year of sleep-deprivation and fatigue when she had her son after the 2008 Olympics, so it is somewhat comforting that even the super-marathoners have to deal with some of these challenges. Tomorrow is another day though, so with any luck, I'll wake up at least mostly rested and motivated to run.

Jack and I will get our first real "date night" this coming Friday. His sister has graciously offered to watch the nugget for a few hours that night and my mom should be fine home alone for that long, so now all we have to do is decide between a nice dinner, a first-run movie or a long row of tequila shots at a dive bar. I guess we can always do the tequila shots at home.

The interview that we had a few weeks ago with a local woman regarding caring for Nathan and my mom didn't work out too well. She seemed really nice on the phone, seemed like she had a lot of experience caring for older people and said she had references. Plus, she had a twenty-something daughter that would be able to join her to take care of Nathan.

I guess I was envisioning a matronly woman in her fifties who was probably on a pretty tight budget since she was out looking for part-time care-taking work. So it did seem a little odd when she drove down our driveway in THIS:
She was in her fifties, but she dressed kind of like a teenager in tight jeans and flip-flops and she wore her long, hennaed hair down. She seemed perfectly nice when we talked to her, but she did not bring references with her. She promised to email them to me, but then never did. Then, while I was in New York, Jack contacted her about doing a basic background check, which she agreed to. But at that point, she broke off all contact with us.

I guess we'll never know quite what was going on there, but there were enough little odd incongruities that it's just as well it didn't work out.

Today though, I met a lovely young woman at the swimming pool who is about to start high school near us and has completed a CPR/babysitting training course. She held Nathan for a little bit and seems to be a natural with babies. Her mom is a nurse and had glowing things to say about her daughter's aptitude for babysitting. She is quite young, but Nathan isn't a tiny infant anymore and I was certainly doing a lot of sitting myself at that age. This girl is also accustomed to being around her elderly grandfather who also has mild dementia, so she said she'd be comfortable with my mom as well.

I still don't think this will work as an all-day solution, but it's another little beam of light in what has felt like a dark tunnel lately. One date night a week is starting to seem like a doable concept.