Life is Not a Journey, Life is Now.

Guide Dog, Marra, hanging out with Tanya (Ice Staff and Friend) behind the counter.

Oh, my goodness its been a long time since I have blogged, but I did not abandon the project, just blogging about it. No time, mostly.

Let’s see. I took about 5 weeks off of skating in the summer to heal my shin splints. During that time, I did keep exercising and working on my ankle and knee/leg muscles.

Mostly what I did was Daily Burn 365. I kind of got addicted to it. I had done another program on Daily Burn called “True Beginner” which was prerecorded. Daily Burn 365 is a live show. Even though I rarely watch it live at 6am, I usually watch it a couple of hours later. So its almost live. You wouldn’t think the live aspect would be that big of deal, but it kind of is. The host and the fitness people are talking about current stuff and it corrosponds with people chatting live and on Facebook about things. People have babies, move into new houses, release books, change jobs, and you get to hear about it. There are weekly themes and guest speakers and its pretty much a community of sorts. Its kind of uplifting and has good messages.

In my past, I was pretty athletic. Not like, hugely talented or anything, but I could do almost anything exercisee-wise in say, two weeks time. So, if I started an aerobic class, the first two weeks might be kind of tiring and not full-out, but after that, there wasn’t anything I couldn’t do to keep up. Now, I am always doing modifications and taking a more low-impact route. It doesn’t seem to improve.

Skating has been the same way.

Its been rather frustrating. I know I’m older now, I know I have chronic illness that affects things like blood pressure, balance, and muscle tone. I know those are the realities. Its been really hard to know how much to push and how much to not push to get myself to maybe improve, but avoid injuries and keep my overall functioning high. I’ve not had these wonderful revelations where people say after like 30 days or so that they feel great and have extra energy and all of this wonderful benefits of exercising. The tipping point between doing just enough to feel good and doing too much and having a lot of debilitating pain or fatigue has been really hard to find. It still is.

So, something kind of helped me from Daily Burn. They talked about how it is not a journey. You know how everyone says its the journey, not a destination? That has always kind of bugged me, because where are you going if there is no destination or if we don’t care about it? And what is the destination? Death? That’s where we all end up, right? But one of the trainers on DB said, “Its not a journey. You are here already.” Like, if you show up to do an athletic thing you are already an athlete. If I skate today, I am a skater. No, I’m not saying I’m a great skater, but I’m a skater. I skate. Skating is happening today. That is what matters.

So, like, my list of skills has been just going nowhere. I’ve had so much pain and fatigue that I don’t even think about my list because all I am thinking about is “Ok, I got here. I’m here. I’m just going to skate and whatever.” This counts. I’m a skater. I skate. Skating is happening today.

I think it is important because I have seen through others how the laws of inertia affect their lives. I do not want to stop, even if going ahead is not showing any appreciable results. Going ahead is still doing, moving, participating, being in it. If I stop, it will be exponentially hard to pick up and go again. I’m a skater. I’m an athlete. I get my body to do some things, the best it can do today. I show up. Things are happening today.

The Hooky Club members are largely older than I am. I see a woman in her late 70s who had a knee replacement. She took 6 weeks or so off. After two weeks, she did not skate but she came and hung out with us. After six weeks, she skated. After  a couple of months, she went to an adult skating camp and just last week I saw her doing pattern dances. Another woman had shoulder surgery and has had a couple of hip and knee replacements. Her husband still skates but she does not. She still comes most days and talks to us and walks around the mall. I like these ladies, if they can show up, so can I.

At a point I looked at the woman who had the knee replacement and how well she is doing and I decided that something is wrong with me. I’m not sure what it is or if it can be fixed. Whatever it is, it does not mean I can’t be a skater and show up, but it deserves some investigation. I should not be having this much trouble, when…look at her!

On a whim, I decided to experiment with my skates. I wore my old Reidells to skate in. I have not worn them since April and I have been working diligently to get used to my new Edeas.

Guess what?

Yup, this is both good and bad news. I think I have figured out (at least one) of the problems. Except that my toes were scrunched up, the Reidells felt fantastic. I had hardly any pain (except for my smushed toes.) I had more endurance than I have had in months. I was faster, more daring, more confident, more comfortable, and took way less breaks. Hmmm.

Its not that the Edeas don’t fit right. The boot feels really good to slide your feet into. Its a difference in the height of the heal and the height of the boot. The heal is just about 1/2 inches higher and the boot is about 1/2 inch lower. This puts my foot and knee in a completely different position to skate on. I’ve been having serious shin and knee pain that did improve during my 5 week break but then started to return after, even though at that point I was only skating once a week. I don’t blame Jim, my skate fitter, because the skate itself fits great. Its just that I can’t skate like that. I think I need a lower heal and higher boot. More ankle support. I thought I would get used to it, but its been 4 months. I don’t know if I will.

So…what to do. Yes, its a lot of money. But it was such a big difference that its like, I feel like never wearing the Edeas again. I like the dance blade, and I can take that dance blade off and put it on my Reidells. I might be able to stretch the Reidells in the toes. I could look at getting new Reidells in the same exact model but with a bigger toe box. (Not gonna go that direction for a while, though. One pair of too expensive skates a year is quite enough. ) So, I’m going to go back to the skate experts and see what they can do. It sucks, but I took a risk with new skates that I could have not foreseen (I mean, 1/2 an inch? C’mon. How could it be such a big deal?) It might have been something that I could have adapted to when I was younger but can’t now. Because I’m a guide dog user and use my feet for tactile information so much, I rarely wear heals of any sort. I think I’m just not young enough to change. I think I can consign my boots and get a little money back for them, but I know it will be a loss. I like the Edeas, but am more happy that I may have found a solution to my ongoing skating issues.

It will be sad if I have to abandon my pretty Edea Overtures, but hopefully they will find a happy home.

But here is the funny thing. ..with the old skates, even though I had to recalibrate a bit and even though my toes were smushed, I wanted to get back to my list! I was like, back crossovers, 3-turns, MITF,  here I come! Feeling like I had some goals and could move forward. So, still not a journey, just more of an exploration of where to go next. Still a skater. I skate. Skating is happening.

So, I was skating ostensibly 2 times a week and doing DB 365 for 30 minutes and then another Daily Burn program like yoga or mobility for 30 minutes on my non skating days. But that was summer. School is in, convention season is here, work is happening, homeschool is happening.

That is the other bit of reality of this. I can’t do it all to the extent I want to do it. So, skating went down to one day a week. Boo hoo! Especially now that I might have solved a big issue. But I don’t get much done on those days and I can’t not get much done on 2 whole days a week. I also don’t have the luxury of an hour plus for exercis

e on most days, so I’ve cut back on DB and am trying to get 30 minutes in a day.

I’m getting in touch with a skate expert who will come to the rink and see about what can be done for my skates. That hasn’t been set up yet, but hopefully it will in the next couple of weeks. I decided not to participate in the Christmas show this time, as I’ve just had so many issues with pain and skating, but if I solve this thing and get back to my list, I think that maybe I could switch to doing Thursdays and taking the group lesson and then get back into that kind of stuff.

I think I have been confused a lot this summer about aging and health and how to manage it. All of this kind of got away from the anxiety thing, because it has caused a lot of additional anxiety in some ways. But I suppose these are good issues to work through. Showing up, whether its skating, DB or whatever, does help decrease anxiety. Bodies decline, some faster than others. We all have to come to terms with that. Aging happens. That is why this “life is a journey” stuff has felt so false to me. If it helps, others, great. But it bugged me. But if I think “life is today, and today I can skate, exercise, take a walk, read a book, help a client, write a letter to my senator, talk to a friend, all the other things my body can do,” then it makes so much more sense to me.

 

Reset

One of the Lloyd Ladies took this of me today. I’m standing in my skates on the ice.

I can be just a bit of a control freak. And that almost caused my skating to go off the rails. Other things caused me to only skate a few times in the past six weeks as well, shin splints, an eye infection, a spree of nausea induced head aching, Even new shoes and a blister. But what was really causing a bigger problem was my control freakishness.

Here is an example: A popular thing for blind people to do is tandem bike. Often, you go to a blind people recreational event and there will be biker volunteers with their tandems for you to climb on back of and ride away on. Its cool. But not for me. I HATE tandem biking, because I am a control freak. I hate being on the back of the bike and feeling like I have no control over where it goes, what it does, how far it leans, etc. So, what do I do? I drive the tandem. I have the (very courageous) volunteer make tactile gestures on my back for left, right, break, etc. And I drive. Now, I’m not an idiot. I wouldn’t do this on a major street with a bunch of cars and stuff. I would only do this on a bike lane that is fairly unpopulated. But still. I think driving the tandem is fun, but not being the rear person. Even better is when I have been able to ride my own bike behind or beside a person riding a bike. But I can only do this on a really easy straight route.

So, doing my lesson with Anthony kind of felt like being on the back of a tandem bike. I felt like I was being driven around. Now, I just want to say here, if any one ever reads this who knows him, I don’t think Anthony did anything wrong. This is nothing to do with him, its all my psychosis. Its a level of not being used to skating with a partner, not being able to see while someone is pushing you around the rink at a speed you aren’t used to, not being able to confidently do the steps independently of him, and not being able to control the pain in my legs I have sometimes when with someone else. Its overwhelming and I was dreading skating. I did not want to dread skating.

But I also see where Anthony could really help me out eventually, so I think if I take these things one at a time, I could get to where I am not feeling like I am on the back of a tandem bike and having a control freakout. So, I think I am getting healed with my shin splints and the time off was good for that. I still did shin/ankle/leg exercises the whole time. I think if I could do most or all of the individual steps independently then I would feel more in control when skating with him. I could also have more confidence with the speed. Then the only thing left is just getting used to the whole not seeing and skating with someone else. I think when I learn the dances better, like where I should be on the ice (I mean they are pattern dances, this is not hard) that will help and then it will all come together.

So, I’m taking a coaching break. Anthony was all cool about it so its good. I returned to skating today after only skating like…twice in the last 6 weeks and got my mojo back. I had very little pain. I mainly only worked on forward stroking and some edge stuff. I’m ready to go back to my list of basic skills and start chopping away on them. And it was my birthday today, so my motto for the year is #48skategreat!

I know in the grand scheme, no one really cares that I skate and its just a frivolous little hobby of mine. But it has been “skate therapy” in some unexpected ways. Stuff like the above comes up, where my personal anxieties and issues come in and I have to decide to deal with them or quit. Its good to push through and work outside of your comfort zone (within reason.) But other stuff is getting worked through my head as well.

I was a caregiver for disabled people for around 28 years. Most notably, I was a primary caregiver for a quadriplegic family member for 22 years. It wore my down. It screwed with my mental and physical health, it was hard on my family, but it was no one’s fault. It just was a difficult situation. Near the end of my time, I would walk over there and feel like throwing up I had such burn out. I quit in late 2016 after finding hired replacements for myself. But it was a hard adjustment I still feel like I am going through. A year after I quit, a lot of things fell apart for this man and he ended up losing his apartment and is now living in a nursing facility, which is not ideal. I feel a lot of guilt over that.

There are three reasons I am even able to skate now. One is because my kids are older and more independent, another is because my husband’s business is doing well and the work I do for him I can do on a very flexible schedule, and the third is because I am no longer a caregiver. While his life declined, mine got dramatically better. Our business got better because Nik and I were not so stressed out trying to take care of him and had more time to sleep and manage things. The kids are not so stressed either and we have more time and energy to hang with them, help them with school, etc.  I was able to focus more on my health, eat, sleep and exercise more. Everything got better for me while everything got worse for him. I still see him in the nursing home regularly and we still text and stuff. I still help him out with small tasks from time to time when I can and bring him things he needs. But it is a complex emotional trip. It became one of those “put the oxygen mask on yourself before you help another” things, and I know if we kept it up, our business might have failed and my health  may have more rapidly declined. And he is not helpless, much of his decline happened because of some poor choices on his part. But I see daily that it is all an awful system that he has to contend with as well that is just really really challenging to be successful in. Its just…sigh. In the last year I’ve been spending a lot of time working out stuff in my brain about the whole thing.

So, I try to keep skating as a happy place, an anxiety reducer and unclouded by controversy and drama. I want it to stay that way because it is important that I have something that can be that. I think this means that I have to take things very, very slow. No rushing into dance lessons, no rushing to gain skills when my muscles aren’t ready. I’m 48 and I can still skate. I’d like to keep it that way.

Spoons, Spoons, Skates and Spoons

This is a graphic that explains Spoon Theory a bit by categorizing different tasks into how many spoons they might take up for a person.

I thought I would write a little about chronic illness management, because it has come up this week and it seems to be such a tough subject for people to understand. I did not skate on Thursday because I was sick. I was not so desperately sick that I couldn’t have done it if I really wanted to, but its an issue of pacing and management and where skating sits on the priority of my life.

So, you may have heard of “Spoon Theory.” If you haven’t, it may help to go read this.

I’ll wait.

So, yeah. Only I think it is more complicated than even she makes it because for me, I don’t know how many spoons I will get a day. It could be anywhere for 5 to 50. Also,when I refer to chronic illness, I am referring to my kidney disease However, my dual sensory loss also plays a role in spoon management.  The same task may vary greatly in amount of spoons it takes based on how well my vision and hearing is accommodated. Say I go to a social event. It is an event with a bunch of blind people so all my blindness needs are met, and since they are disability savvy, they are better than average but not perfect about my hearing. That event will take much less spoons than an event that is not disability aware, just everyday people. In this event, NO ONE is going to tell me who they are, where the food is, what is going on, they will point and say things like “over there, ” I will have to go to them because most will be too afraid to talk to me, and when I do, I will have to answer a bunch of monotonous questions about disability and go into “education” mode even though I would much rather talk about other things. This event will take maybe triple or quadruple the spoons of the disability aware event. The other thing that is more complex is that I don’t necessarily start with a fresh supply of spoons every morning. If I used too many spoons yesterday, I may have less today. If I decide to use too many today, I may be borrowing them from tomorrow. Its complicated.

Here are some of the things I do to try to make sure spoon management is more of a physical thing to deal with than an emotional stressor:

• I put things into categories. I’m lucky that I rarely have too many days where I can do absolutely nothing. So, I can arrange to do things from a less demanding category or a more demanding one based on my level of energy. For example, most desk work, I can do unless I feel so shitty I can’t concentrate. So, there is always something I can usually do to make myself more productive at home.
• I don’t think of sick days as days where I am just waiting it out getting better. I know that there will be a time when there is no more “waiting it out.” This is it. I don’t waste days being sick. So, I have a running list of tasks in all different spoon categories. There are always low spoon tasks. And even if I can’t do a whole day of low spoon tasks, I could do one…or two, or three. At the very least, I can hug my kid or my dog or my husband and try to be a good family member for a few minutes. Then I have not wasted a day.
• I have back up plans and more back up plans. Life for myself, nor my kids or others should not stop if I’m sick. It may be rearranged, but there should be no wait around to get better type of things.
• This is important when making commitments which is almost impossible to do when you have a chronic illness. Its scary. So, I give people advance warning and I tell them what my back up plans are. For example, every term I have to volunteer for 4 hours for my kid’s school to get a tuition break. I tell them upfront about my situation. I pick three things on three different days to do. I prepare substitutes for myself. And then I will be able to get one of those days done without too much letting people down. In college, I would talk to professors at the beginning of the term and say I may be here for ever class or I may miss too many classes. Lets negotiate what I can do if I miss too many. How many is too many? What alternative assignments or learning can I do to make up for missed days? It worked so much better to do that upfront.
• If I do commit to something that absolutely cannot be changed. There is about an 85% chance that I can push through it no matter what. But then I make sure that there is recovery time both before and afterwards. I would schedule easy days around it.
• I don’t listen to any kind of talk about my being “not sick enough” or “too lazy” or any of that shit. I and only I decide what I am well enough to do. No one else can judge me. I see what other people call “sick” and its bullshit. People who are well all year and then get a cold and take off a week and whine about it. The same holds true if they say “You are too sick to participate.” Chronic Kidney Disease is not contagious. Only I decide if I’m too sick to participate in something.  I know I’ve done way more sick than they’ve ever done, so its just impossible for others to judge you appropriately. I try to do my part to lessen any impact on others if I can’t do something, but that is where my responsibility ends.
• I also have a responsibility to take care of my health and try to work at as full capacity as possible whether that means going to the doctor, eating the right foods or understanding how to use Braille with a computer or finding a communication method that works. But I also understand that these things are ever changing, my body is ever changing, science is ever changing, and there is no way to always know the best way to take care of and manage my disabilities at all times. I do my best to keep up with it all, I’m not perfect, and I’m not going to feel bad about not being perfect.
• I understand and appreciate the concept of partial participation. With skating, I know that I cannot skate every day, do every class, competition, test, etc. I appreciate what I can do and don’t have an all or nothing attitude about anything. I try my best and measure myself against that and not what others can do. Doing a part of something is better than doing nothing at all.
• I prioritize based on my own priorities as much as possible, not others. Its not always possible. There are some bullshit things you have to do in life, like paying my water bill every two months by hand because the stupid water company won’t let me set up auto billing. Its stupid, but no water in the house is a very bad thing, so I do it, (fortunately its on my easy list.) But many, many other things do not have to be done, nor done by ME. This sometimes means my house is messy or the kids are eating McDonalds food. But my priority is that my kids get fed, healthcared,  educated, and feel included and loved at home. How I do that is sometimes fantastic and sometimes (McDonalds) just getting by.
• I am extremely lucky to have been able to set up a very flexible schedule for myself where we still earn enough money for the necessities of life (largely thanks to my husband, who is a workhorse and entirely supportive of me.) I know that this is difficult and not everyone can do this. But more and more work is getting more flexible and things like telecommuting, gig economy, work-life balance programs can help with this. As much as humanly possible, I’ve tried to build a life where my disabilities and illness are not obstacles but can be used as strengths. I am lucky to have several outlets where I can help my husband earn money, help other people, be creative and have a meaningful life even with disability and sickness. There are sacrifices to this. I could have had a more prestigious career, made more money, etc. But really? Perhaps not if I was always failing because I was sick all the time or unaccommodated and killing myself to make it in a full-time working world.
• I know that life is precious, at any time an instant could change your whole life, and there is only so much in my control. I try to make the best of what I have control over and forget the rest. I have a good inner core about who I am and what I can do. I don’t get concerned with who I am not or what I can’t do. I try to just expand upon what I can do and who I am. We are all in a decline, I know that there will be day I can no longer skate or remember who I am or fill-in-the-blank here. I can’t be scared about that. I can take advantage of what I can do today.
• Whining is extremely irritating to me. I try not to do it (much.)

None of this ever works perfectly nor do I always have the perfect attitude about it. But it tends to balance out in the end. I come back to this core. I was disappointed to have missed Thursday skating, I would have rather gone and done my group lesson (Its been three weeks!) But I did some other things and that day is done. I can’t get hung up on it. And I plan to go back Monday and so I am still a skater.

I’ve often said, oh-big deal about being Deafblind, but CKD is kicking me in the ass and making me feel like I can’t be who I want to be. It has been what feels like an “impairment” vs. the other stuff which just felt like an identity that has brought me more good than bad. I’ve often wondered why I can’t seem to look at CKD in the same light as my sensory disabilities. And…I finally think I’m starting to a bit more. This is who I am. I can do this today. I can’t do this today, maybe tomorrow. I’m not going to feel bad about it or apologize to anyone for it. I’m doing as much as I can and that’s enough. That’s me.

 

Weekly Wrap-Up 3

All in all a good week. Goals of getting to both rinks and getting comfortable with them were met. My total exercise time was 3:30, with something done all seven days. Two skating sessions, 4 Stretch-It Sessions and 3 Fitbit Coach Sessions. Blood pressure was in the 117/75 area, which is good. My weight continues to rise at a bit of an alarming rate. Its not as if I’m pigging out or anything. So I’m going to go one more week and start tracking my food again. I would have to take this data to the doctor anyway, so I’ll get a week or so down and then see where I am next week.

I can’t be building all this muscle weight, can I? LOL. By the way, the only restriction I have on fitness as far as being a kidney patient is that I can’t lift weights. I have about a 25 lb. “everyday lifting” limit, which is just what you can carry around. I still drag around 40lb bags of dog food but I try to drag them or push them rather than dead lift anything that heavy. It has more to do with the restriction of proteins and that my muscles have more trouble repairing themselves after a sudden “trauma” which is what heavy weight lifting really is at the muscular level. My kidneys spill protein and I also have a 20% (of my daily calories) restriction on eating protein, so that is the kidney concern, that the burden on my muscles to rebuild cannot be too much, too fast. Also there is concern about inflammation and my back. So, that is it. I can do “body weight” exercises, like TRX or Pilates, where I am lifting my own weight. But it is a matter of pacing and not increasing the exercises too much too quickly. But no bench presses or leg presses on the big machines. Otherwise, exercise is good for kidney patients.

This is why my stretching and fit coach apps are only 10 to 15 minute things. They are just enough to get my body and circulation moving, get all the kinks out, but not over stress me for the longer workouts like skating or an hour long yoga class (after walking a mile to the gym.)

As far as anxiety, I was laughing when I was on the train going to skating because I was having such anxiety about skating but skating was supposed to be helping my anxiety. I was like, I just got my skates sharpened! Am I going to crash and die? Am I going to bumble around and smash into someone and something? How will I know when to get off the ice when its zamboni time If I can’t hear the PA and don’t notice the others leaving? Will I be able to find the bathrooms? The lockers? Will the lockers be accessible? Will the staff help me if they aren’t? Am I going to look ridiculous (probably)? Am I going to get treated badly by the staff? Why am I even doing this? I have other things I need to do! But both times, after I got out there and skated for about 5 or 10 minutes, my anxiety went away. So, hopefully, the on the train to the rink anxiety will go away as it becomes more routine.

In any case, this was the week that this blog started actually being a SkateTherapy blog and I actually got out on the ice.

 

Thoughts on “A Skating Life” by Dorothy Hamill

A cover of Time Magazine from shortly before the 1976 Olympics with Hamill on the cover doing a flying entry to a spin. The heading says “Artistry on Ice.”

A friend who has been following my little project suggest I read Dorothy Hamill’s autobiography called “A Skating Life” which was published in 2007, so its a bit dated. Dorothy Hamill is probably the first figure skater who caught my eye as a child. The 1976 Olympics were the first Olympics I remember watching and probably my first real exposure to figure skating. I, like every other kid of the 70’s, got the haircut (sort of, mine never panned out as well as hers did), pretended my white ankle socks were skates, and slid around the linoleum floor making up skating routines to ABBA’s “Dancing Queen.” Shut up, if you were there, you did it, too. Admit it!

She was probably responsible for my starting to skate as a child (after bugging my parents about it for some time.) I remember checking out a library kid picture book about her life, and I didn’t want to give it back so my mom photocopied and stapled together every page of the whole book at her office for me.  Incidentally, my first coach in Omaha was Juli McKinstry, who was of Hamill’s era and placed second to her in the US Nationals back then. McKinstry is mentioned a few times in the book, so that was fun. I still admire Hamill’s skating. She was of the era where compulsory figures counted for up to and over 50% of the score, and hours perfecting those boring figures gave skaters of a previous generation an edge quality speed and control that you just don’t see today.

The book was suggested because it, too, talks about skating as mental health therapy. Hamill and members of her family struggle with depression, and it deals with that. I thought the book did a good job of showing a complex picture of her relationship with her mother. She both appreciates, loves, admires, and resents her mother. She empathizes with her mother’s probable mental health issues, while being honest about how some of her mother’s behavior was very hurtful and damaging. I get a bit annoyed when people are like, ‘my parents are the greatest and they did no wrong!’ because its just not true. Neither is it true (in most cases) that parents were the most terrible, wicked people on earth who are totally and 100% responsible for all your adult problems. Parent/child relationships are complex and nuanced and it was nice to read an honest hashing out of that fact.

Hamill comes from (or came from when she wrote the book) the “chemical imbalance” philosophy in regards to mental illness; specifically depression. This idea was really pushed by the psych community and by pharmaceutical companies in the last couple of decades so it isn’t hard to understand why she came at it from this angle. There is a growing pile of evidence that is pulling away from that theory in the past few years, though.

A disclaimer: This isn’t me saying Dorothy is all wrong about this and I’m right. This is just my thoughts and confusion over this issue. I do not claim to be an expert nor to even be well-read and up on the latest research.

But here is the deal: I have always wondered why everything can be blamed on a chemical imbalance when sometimes bad shit happens in life (either single traumatic events, or a series of events or a pervasive issue). I mean, bad stuff happens and it makes you depressed sometimes. If we always say if you are ever depressed it is a chemical imbalance, it seems a nice easy way to have an excuse to buy a pill and not change anything in your life.

In the book, Hamill describes a summer of debilitating depression where she had suicidal thoughts and laid on her parents couch for weeks and couldn’t get up. This is when she seemed to figure out that she had a hereditary chemical imbalance that was causing her depression. Okay. But also, in a very short period of time (its hard to tell the exact timeline, but it seemed to be in just a couple of years) she divorced her “love of her life” and then he tragically died in a plane crash, she got married and had a baby, her new husband started mooching off her and she was paying for everything, then he got her involved in a bad deal and she lost all her money, a job she loved, and had to declare bankruptcy, and like, at the EXACT same time, she found out that he was having multiple affairs on her. It was at this point, that she took her young daughter, became a single mom and got depressed on her parents couch.

Well, Yeah. After all that, you are SUPPOSED to lay on the coach and not be able to get up.

In terms of her mother, she felt like her parents drank a lot to self-medicate, and that meant that they also had a chemical imbalance. Again, I think lots of people have vices to avoid dealing with their problems. (Actually, I think we all have vices to get through the day. Its part of being human. Its just that some are MUCH more self-destructive than others. We all have to choose one or two, but we must choose wisely.)

I think her mother was very unhappy being a skating mom. Moving around the country away from your husband and other children, living in shit apartments, and then sitting in a cold rink all the time sounds like a crap way to live. I would have probably been depressed, too. As parents, we all sacrifice something of ourselves for our children. Mostly we do it willingly, its a part of parenting. But I think for mothers–especially mothers of previous generations–it is incredibly hard to find the balance of acceptable and worthy sacrifice vs. throwing out your whole identity and being miserable in sacrifice to our children. I think parents struggle with this daily. If the delicate balance gets way off, either way, there is going to be trouble. I think probably for Hamill’s mother, the balance was way off, and it was way off for over a decade. After that long, even if you wanted to hide your resentment, it would be hard to maintain. Even if you wanted to do whatever you could to help your daughter reach her goals, it would be hard to not feel grief for the other things you could have been. Its complex, and I think Hamill’s mother struggled with it and probably did not know how much her struggle was hurtful to her daughter at the time.

Again, real external life reasons for depression. Not some magical chemical imbalance…maybe.

I’m not saying there isn’t biological and hereditary causes for depression and other mental illnesses. Nor am I saying that “its all in your head.” Its real and I get that. But I get a little nervous when so much emphasis is put on some unmeasurable but scientific sounding “chemical imbalance” instead of looking at real life circumstances and trauma that may be able to be changed or modified to improve someone’s situation. It makes it all too easy for systemic and societal problems to be left unsolved and blamed instead on individual vulnerability to mental illness that can’t be changed.

Hamill said that whatever SSRI she started taking (Paxil, IIRC) helped her get off the couch so she could makes changes and put her life back together, which she did. I get this. I get that medication can take off the debilitating edge that makes looking at your life and making changes impossible. She noticed later than her mom was also taking an SSRI and that made her feel better about her relationship to her mom because she empathized with her. Okay.

But there was real work to be done with her mother and her and eventually, she got around to doing it (on her part). Perhaps her mother also tried to make amends and apologized for some of the hurt she caused her daughter. Or perhaps she didn’t. Hamill seems to be all ok with it because she believes her mother had a chemical imbalance and that gave her an excuse.

Its a hard thing, there are certainly biological, physical aspects of our personality that we do not control and we are just born with. And then there is free will and personal responsibility. I think we all (most parents, especially) do the best we can with what we have. I believe we are mostly well-intentioned and try our best. Sometimes, our best isn’t good enough and we screw up our relationships a bit in the process. No one person (parent) can be all things to every type of person out there (every kid.) Sometimes you are going to fall short.

It seems to me that Dorothy’s mother often fell short without meaning to. She also just as often went above and beyond. Dorothy, in her own life and failed marriages and business dealings,, also both sometimes fell short and went above and beyond. The good intentions were always there to match the exact balance of self-sacrifice vs. compassion for others. Not being able to be all things to all people is being human. Being depressed when you screw up (or life screws you over) happens. That is a good thing that–when used correctly, like fear–can get you to get and give what you need. It seems to me that this is what the book was truly about, much more than any kind of case for a mysterious “chemical imbalance.”

Again, I’m not pooh poohing biomedical causes for depression, nor am I anti psychopharmaceuticals. I”m just doing what always needs to be done, trying to balance the biophysical with the environmental. Its probably a different balancing point for everyone. I do think that–when not too under pressure–skating was/is a healthy mental health vice for Hamill. One of the reasons I am insisting on skating is so I can swing my own pendulum between self-sacrificing mom who is there every waking moment for my kids and neglectful parent who goes off somewhere to pursue my own pleasures for hours on end. Will I get the balance exactly right? No, I won’t. Not every day. And that’s kinda depressing, but I’ll just keep working on it.

Anxiety, can’t get nothin’ done/Anxiety, spoils all the fun…

 

With apologies to Ms. Benatar, this is my test to see if I can post video.

I’m not going to go into too much gory detail about my anxiety problem, diagnosed by the DSM VIII-whatever as Generalized Anxiety Disorder, or GAD. But, I guess I should talk about it a little to get a sort of baseline.

I have had it off and on all my life, but it came into sort of full chronic glory in about 2011 or so. Its like, think of something that makes you really anxious or nervous, like speaking in front of a large group of people, or taking a really big test, or singing/performing in front of an audience, and having that feeling all the time. For really, no reason most of the time. You can’t settle down. And then when something comes up that might really make you a bit nervous, it overwhelms you so much on top of the anxiety that you already have that it makes you avoid things so as not to just go off the deep end.

Mine has started to manifest itself in social ways. Much of this might be due to the fact that since my hearing has gotten significantly worse over the past decade, social interaction is seriously HARD WORK. And rife with miscommunications. I used to be much more outgoing than I am now. I avoid social situations more than I would like, and sometimes my communication can be really clipped and direct just out of communication efficiency, but that can be off-putting and I get that.

I don’t think any one thing happened in 2011, just that around then, my life became a lot less manageable. I realized that I had bitten off more than I could chew, in that I could not keep track of all the things for family and pseudo family anymore. I had three kids, two step kids, a husband, two dogs, a quadriplegic family member I cared for, it became too much. I knew it was too much, but here I was and I can’t throw any of these people overboard. So, I settle the best I can, try to delegate, try to let some things go that are low priority (my house, my career, my extended family all to some extent) and just hold on and do the best I can. My children are getting older and more independent, and I have gotten better at adapting over the years. But I’ve also gotten sicker, older, and my own needs have gotten greater as far as what I need to do to take care of myself. So, I maintain this constant level of hyper-vigilance and anxiety. It never goes totally away.

I’ll be at the park on a sunny day with my kids. They are enjoying themselves, I have nothing pressing to do. Things are ok, but I always feel like something is wrong, I need to be somewhere else, doing something else, the other shoe will drop at any moment. It keeps me from enjoying the moment.

I constantly feel stuck in my house, stuck in my town. The thing is, its not a bad place to be stuck. Its actually a really nice place to be stuck. There is no reason for it to feel like this. The flip side of that is that I also feel like I’m going to be homeless in a matter of weeks, like one thing will cause everything to unravel.  Things can be going really well and I know intellectually that they are going really well, but my physical body is feeling wired, like something is wrong just on the horizon, all the time.

I can tell that this feeling is physical, not mental, if that makes sense. Like, intellectually and mentally, I’m good. But my body is still acting like its just about to go into a war zone. So it is a hyper-reactive physical response that my body has gotten stuck in. Like it trained itself to have this reaction and got stuck there. In that way, taking medication made a lot of sense.

So, medications worked to a degree. But not all the time, and I was getting worse lab work and kidney pain when I took a high enough dose to really chill me out. I tried different ones, but some caused nausea or constant sleep. It was also costing me a lot of money and time and frustration, so I sort of ditched the medication side of the effort.

So, I’ve tried other things, meditation, cognitive behavior therapy, etc. And each of these has its place. Meditation never made sense to me until I read the book “10% Happier” by Dan Harris. That book helped me understand and appreciate mediation a lot more than I had. But I still knew that I was not going to go to a meditation retreat and sit for 5 days and do nothing like he did. I can barely do it for ten minutes. It is definitely a tool in the tool box that can cause some temporary relaxation, but it doesn’t interest or inspire me that much.

I learned a lot of CBT techniques in my 20s, and they were helpful. But it feels like now if I go to any kind of talk therapy, I’m just talking and paying someone to say supportive things to me. I’m not making any breakthroughs. My husband lets me talk to him and says supportive things to me for free, and he doesn’t need me to completely educate him on deafblind/disability stuff where I almost feel like I should be paid for helping them deal with their issues on disability. So there is where that is. I think it can be really hard to find a good therapist, and I just don’t want to put forth the effort, lets be honest. That isn’t where I want to exert my energy.

Exercise has been one of the main things that has helped the physical symptoms of anxiety for me. But, I can’t just get on the treadmill. I have to be engages and in the zone. It has to be a challenge where I am using my mind and body to work towards a new skill or goal.

Skating is not the easiest thing to do at my age and disability. People told me I should swim competitively. I tried for a while at hoity toity gym, and I’m not bad at it, but it doesn’t excite me like skating. I still do it for exercise sometimes.

The only other thing I have found that helps is to sort of get out of my own head as much as possible. Like, doing random acts of kindness for others and thinking of myself as a tool to help others. For a time I was trying to do an act of kindness every day, but it got rather contrived. As a disabled person, I know when someone is trying to push help on me just to make themselves feel better or be a “helpful hero.” and I didn’t want to do that to anyone. So, instead, I try to look for opportunities to help when it is genuinely needed, ask first and let the other person direct what they want. So, it is not something where I’m like every day paying for the guy behind me in the coffee line and putting it on Facebook for likes and all that. Its more of a mental state of trying to see what positive vibes I can put out in the world. Just switching my mentality outward instead of inward can help my anxiety and make me bolder.

In terms of skating, I found the adult skating community (and even lots of the super talented kid skaters) to be really supportive because it is such a difficult and unique endeavor. As an adult, you have to be doing it for the love of it, or it would be too frustrating. I enjoyed this vibe, and hope to find that again and maybe turn my mentality outward there, eventually, too.

Attitude

I hope I am not getting ahead of myself since I have not even established a relationship with a rink yet and gone skating again…but since I made this decision, I’m starting to notice that my attitude is changing already.

I belong to this fancy-schmancy gym. I started going there a year ago because the other gyms I have tried did not work well with me and it was a constant struggle. This gym has lots of activities for my kids to do and they have been nothing but helpful to me. They keep my guide dog for me so I can swim and shower and stuff without having to worry about where to put her (I use a white cane in the gym). They have encouraged me to try different things. When I’ve had difficulties (like when I inadvertently pissed a woman off because I walked in on her in the shower…ok, its really hard to TELL! They have glass shower doors with no locks. I can put my hand on the door and feel if the water is running, but if the water is off but someone is still in there, its almost impossible to tell!) Anyway, they stood up for me, helped me smooth it over with the woman, and helped me workout an almost foolproof system to find an open shower. They have been really great.

Here is a picture of my hoity toity gym’s locker room. Guys! They even let me reserve a locker with an accessible digital lock since I cannot use the normal locks visually. This is an example of how sometimes, when you are disabled, you pay extra just so something can be accessible to you.

But to be honest, I haven’t utilized it as much as I could be. A lot of times I take the kids to their stuff there and then just sit around and laze. Its partly due to the energy it takes to get there. Its a short train ride and about a mile walk (or I could take a bus, but the kids like to walk and its quicker). But another part is just insecurity with trying new things and feeling like a bumbling idiot. I have taken classes and stuff when I was younger, but in my old/middle age, I’ve just felt like an old frump. And I just felt like I was everyone’s pain in the ass.

So, today, because I’m all like, I need to get in shape for skating!!!, I was brave and took a yoga class. It was actually a family yoga class, which had more to do with a scheduling mix up than anything, but it turned out well. It was easy. I am somewhat familiar with yoga poses (I know what a downward dog is, etc.) and the teacher was really good and describing everything I didn’t know. I doubt I will take that one again, because the kids were mooing and meowing and stuff for the animal poses, and I’d rather have a little more of a workout. But it was a good intro and I did it!

I also signed up for a 1:1 pilates reformer class. I did pilates years ago. So again, I’m familiar with how the reformer, cadillac, etc. works, but they require a solo class before you can go on to the group ones. So, after saying I was going to do it for forever, I finally did. A solo class will be good for me to refresh my memory and learn my way around the equipment at my gym. But I really loved pilates on the machines (hated mat pilates, although I am sure its very good for me.)

But the most significant thing is, I just *feel* different, just from putting myself back into the mindset of being a skater again, an athlete. I’m in not so great shape, I have a LONG way to go before I can really call myself a skater again. But today in yoga, I started feeling like, this is the body I used to know. The body that can do things when I work on them. The body I can have command over. Its kind of weird how just thinking about skating again can give me this level of motivation and confidence.