True love waits…

In June 2016 I reconnected with someone I loved dearly in 2009. During our six year hiatus, we both thought the other wasn’t interested in reconnecting, only to find out our love for each other was just as deep and passionate now as it’d been in 2009. For reasons basically outside of our control, we aren’t able to be together right now.

I love Sean in a way I’ve never known love before. I had no clue I could love someone with the breath and depth with which I love Sean.  I had no clue how friends could find someone they were willing to commit their lives to, and stay married to, for decades. With Sean alone, I understand those feelings. My love for him is unconditional, and believe me, those conditions have been well tested. I may get momentarily angry, but it’s impossible for me to stay angry or feel resentment towards him. Our time together has never been simple or easy, but it’s always worth more than I could ever express.  I accept him exactly as he is, even accepting our inability to be together right now. I believe in him as much as I’ve ever believed in anyone. He’s absolutely my equal; I’ve never felt above or below him.

While everyday I hope we’ll find ourselves in a place where we can be together, I acknowledge it might not work out. Still I’m grateful for him every single day. He makes me a better person, without having to do or say a thing. Even apart, I feel as loved and wanted by Sean as I love and want him.

I don’t know how this story will play out, but I know it will never be boring. It doesn’t matter if we have 4 days, 4 months or 40 years together, my love for Sean is the realest, truest love I’ve ever known.

Friends who knew us in 2009 might not understand this, and that’s okay.


Babies babies everywhere

My social groups have always been primarily child-free or, if there were kids around, they were older. Between Dec 2015 and Jan 2016, three sets of friends had babies.  At first I thought this was an anomaly.  Then a few weeks ago, I attended Isaac’s 33rd birthday party to play Dominant Species.  The four other players were all recent (or soon to be) parents.  The day before I played 1830 at Ehren’s.  He too has a 5 mo. child.  Obviously the burst of family growth wasn’t an anomaly.

There are many potential explanations for having so many child-free friends and why that may be changing.  The change shouldn’t be surprising given I tend to spend a large portion of my time with 30-somethings, specifically gaming mostly with younger guys, than with folks my own age.  My life has never been very conducive to having children around.  I spent my 20s in grad school; I actually interviewed for my first professional job on my 30th birthday.  During my 30s,  my partners and friends were mostly gay and lesbian.  Laural and Sue both have kids and were the exceptions.  I was 37 when I had my car accident.  My 40s didn’t really exist, as I was primarily housebound recovering from the accident.  So here I am in my early 50s being exposed to babies for the first time since the birth of my siblings over 40 years ago.  I like it 🙂

As much as I like it, I can honestly say there’s not been a single day I wished to have a child.  Don’t get me wrong, I love spending time with kids.  Seeing Erica every month or two is a highlight on those days.  I’d be happy to forego gaming and play with her.  I’d probably enjoy being involved with someone with kids.  I’ve just never had a desire to have a child myself.

I fondly remember the times I spent at Laural’s, when I lived in New Paltz, with her and her two kids, Shane and Tarah.  I used to head straight to their home after work, have dinner with them and then hang out, often playing Scrabble or Chinese checkers.  They’re the closest I’ve come to having kids, and I love them.  At the time, they were around 12-14.  It still warms my heart when I think of Shane bringing me a plant and bottle of shampoo while I was in the hospital after my accident.  Laural wasn’t interested in being involved with me at the time, but had she been, I likely would’ve stayed in New Paltz or asked them to come with me to my next job (aka Boston).  Sue had Harrison (9ish) and Becky (18ish), but I didn’t spend much time with either of them.  During grad school, Margy had Paul (4ish).  Many of my current age-appropriate friends (mostly at Cards and Conversation and my 40+ book club) have adult children they speak of at times, but I’ve rarely ever met them.   That’s about the entire extent of my exposure to kids.

I guess if I’d ever had the desire to marry (which I haven’t), things might have been different.  Valuing a single, non-monogamous, education then career focused life through my 30s didn’t exactly lend itself to me being around many kids.  I’ve had four conversations about marriage and a couple about kids over the years, but I’ve never been very interested.  I remember Donna (from my grad school days) telling me those feelings would change, but they mostly haven’t.

Around the time I turned 50, I did begin to notice a bit of a change. For the first time, I became open to monogamy (though its feasibility remains untested) and even to the possibility I might someday marry.  I can look all the way back to 8th grade and see my proclivity for non-monogamy, even though I didn’t begin identifying as non-monogamous until 1995.  Typically I have several long-term FWB relationships, either with or without a primary partner.   Maybe turning 50 made me think I might like to grow old with someone.  Maybe I’m a little more mainstream as I’m finally recovered enough to slowly reenter society.  Or maybe I’ve sufficiently sewn my wild oats and am finally ready to settle down.


Watercolor class 5/8/17

Last year I went to a watercolor class offered by the Charlestown Public Library.  I didn’t like the class because there wasn’t any instruction.  Yesterday I went to the first of three watercolor classes, hoping the instructor would be someone other than the woman from last year.  No such luck…

This time, again without instruction, she wanted us to paint this still life. 20170508_134829 Who asks beginning watercolor students to paint white flowers, without any instruction as to how to do so?  I thought she was crazy, as did most other women at my table.  Of the four of us, only one attempted to paint the flowers.  She too was a total beginner, but I must say, she did a pretty good job of painting light gray shadows and pink dots here and there, such that if you knew you they were supposed to be flowers, you might be able to see them.  At the end of class, the instructor took her painting and started telling what she should’ve done and painted over her work.  It’s another thing I don’t like about this instructor.  Without even asking permission, she just takes your work and starts painting on it!

Anyway,  the instructor labeled our table “the anarchists,” LOL.  We liked that title.  I may have actually started the revolt.  She said we could paint anything we wanted.  She’d shown us several examples of watercolor.  “The anarchists” each chose one of those works.  Emily chose to do a few images from a watercolor manual.  Another woman chose to copy a John Singer Sargent mural.  I chose to replicate a simple ship from a children’s book.Jpeg

I wanted to do something simple that played around with a couple of techniques.  I was pretty happy to be able to make something that resembled the original (I forgot to take a pic of the original for comparison).  The addition of clouds was my doing and I liked it.  Despite how simple it was, I wasn’t able to complete it in the 1.5 hours.  I was planning to go back in and draw the top of the lighthouse after I painted it (which may not have been a good idea), as I wasn’t sure how much I’d be able to leave white.

Will I return for the last two classes?  I guess I’ll find out.  Last time I didn’t continue, but this time I might do so just for the dedicated time of doing something creative.  I really love doing art, but for some reason, I seem incapable of sitting down alone and beginning.  I have the supplies, just not motivation to get started.  Maybe I should find someone to get together with, as if I have room in my already insanely busy life…

Making this post also serves as a reminder that I didn’t finish posting the art projects I did with Elle in 2016.  Before the new round of classes begin, I want to get those posted.  Posting helps me look back and see if I’m making progress over time.


Happiness, cultivating compassion and daily meditation

In September, I felt quite stressed and overwhelmed.  In looking for ways to relieve my stress, I found an 8 week secular meditation class, “Cultivating Compassion Training” on Meetup.  Yes, I saw that compassion was in the title, and yes it was part of the Center for Compassion and Altruism Research and Education (CCARE) at Stanford University School of Medicine. Compassion has never been something about which I’ve given much thought. I’d convinced myself it was primarily a meditation class and compassion was just the wrapping. The class was actually all about compassion. I actually took the class twice; the first time to focus on my initial intent of starting a daily meditation practice and the second time to focus on the actual intent of the course, compassion.

I’m so grateful for that stress in September, as it helped bring me to a place of feeling the happiest I have since my accident in 2002.  Sure there’s definitely other factors, but the current 30 minute mediation practice I have each morning has been the major component in me finally being able to say  I’m happy again.  I’m talking about happiness as a state, not an emotion.  Happiness as a state resides deep within; it’s peace, contentment, acceptance, an inner smile. It’s unaffected by the typical ups and downs of life.  Fifteen years is a long time not to have felt this good, so I’m especially grateful for its return.  People tell me I’m glowing, even if I say I’m tired or not feeling well.

It’s been a process getting here. At the beginning, I was meditating about 3-5 times per week, primarily using guided meditations provided by the instructor.  By the end of the first round of classes, I’d started using the Insight Timer app and was meditating daily.  As of today, I have 90 consecutive days of meditation.  By the end of the second round of classes, I was moving from guided to silent meditation.  At first I didn’t know how to spend the 30 minutes, but I’ve since found a formula that works for me.  I suspect it will change and evolve (I’m thinking of adding some tonglen to it), but I wanted to record my beginning here for a couple of reasons:  I had a difficult time finding specifics on how people spend their time in meditation, so I wanted to document mine.  I also want to see how my practice evolves.

So here’s my 30 minute daily practice in a nutshell.  Occasionally I do something totally different (there are many forms of meditation), but this is what I’ve found works for me.  As I said, I use Insight Timer.  It’s set for 30 minutes with a starting bell, one interval bell at 5 minutes and three closing bells.

  • 3 deep breaths, breathing in through my nose and out through my mouth
  • Quick body scan, relaxing my jaw, face, neck, shoulders, arms, back, legs, feet
  • 5 minutes of breath focused meditation
    • As I inhale I feel the cool breath enter my nose. I feel the warm breath leave my nose as I exhale.  I count each breath on the exhalation until I’ve reached five breaths, then I begin again.  I’ve found if I count to ten, my mind tries to keep track of how many total breaths I’ve taken in the five minutes, so I’ve reduced it to 5 (sometimes I pick a random number and count to that instead).
  • About 15 minutes of loving kindness meditation (also known as metta and the focus of the classes I took).  My version of metta progresses through several stages, each with three parts, including a mantra.
    • The stages are:
      • Self-compassion
      • Compassion for people in my life who are difficult
      • Compassion for friends, family and loved ones
      • Compassion for people in my building
      • Compassion for everyone in Greater Boston
      • Compassion for everyone in the United States
      • Compassion for everyone in the world.
    • Each of these stages include three parts:
      • Gathering and focusing the group at hand in my mind
      • Just like me… statements (aka focus on common humanity)
      • Mantra
  • The remaining time, usually about 5-10 minutes, I focus on identifying the many things for which I’m grateful.  5-10 minutes seems long, but once I get going, it’s pretty easy.  I start by focusing on yesterday and the people, places and things for which I’m grateful, then I look forward to today and then I just go wherever my mind takes me.

Now for the nitty-gritty, because that’s where it’s at for me.  I think most people who do metta focus on a particular difficult person and loved one as they go through the stages.  I did so at first, but I found I prefer focusing on groups of people.  If I have some strong feelings and want to spend time focused on an individual I’ll do so, but groups generally work better for me.

Mantra.   The mantra I use at the end of each stage is:

  • May you be happy.
  • May you be free from suffering.
  • May you be free from fear, anger and anxiety.
  • May you know peace and joy.
  • May you be well.
  • May I be gracious and vulnerable with you.
  • May I show you respect, kindness and compassion.

Self-compassion.  I start with self-compassion.  I think about my friends and loved ones who love, support and wish me well. I think about the interconnectedness of us all and how it takes millions of people to support my life, from the farmers who grow my food to the workers who made my furniture to the delivery drivers, administrative staff, managers, service employees, medical staff, government employees and everyone along the way who’ve helped create the life (and the things) I have today. I think about the millions of others meditating, wishing me happiness and freedom from suffering.  Then I slightly tweak the mantra to make it work for me.

Compassion for people in my life who are difficult.  While doing guided meditation, I’d focus on a particular person. After a few weeks of doing so, that person no longer felt difficult to me.  Our interactions began to change, not because they’d changed, but because I had.  By the time I moved to silent meditation, I decided to focus on “difficult people” as a group, thinking about individuals with whom I struggle and types of people who might annoy me.  Then I’d focus on our common humanity; i.e. how they’re “just like me”

  • Just like me, you want to be happy.
  • Just like me, you struggle.
  • Just like me, you have baggage that can get in the way.
  • Just like me, you do your best.
  • Just like me…

I believe it’s been the focus on common humanity  that’s brought about the biggest changes for me.  During class, we only included a focus on common humanity in the beginning.  While I discovered self-compassion to be quite easy for me, common humanity required more effort (this seems to be the reverse for most).  What’s interesting is even though I say, “Just like me…,” what I mean is “I’m just like you in that we both….” Focusing on our commonalities rather than our differences  has been transformative, not just with “difficult people,” but across the board.  I no longer really feel that people are difficult.  I finish with the mantra.

Compassion for friends, family and loved ones.  Here I think of all the wonderful people who’ve graced my life, from childhood, undergrad, grad school, through the places I’ve lived and worked.  I am truly blessed to have known so many beautiful people.  I  focus on our common humanity, such as “Just like me, you have competing priorities that limit your available time.” then repeat the mantra.

Compassion for people in my building.  Since 2004, I’ve lived in the same high-rise.  Like friends and loved ones, this group is pretty simple and straightforward.

Compassion for everyone in Greater Boston.  Here I focus on the people with whom I interact most.  I think about MBTA workers and passengers, people on the streets and in the shops, people at my appointments, as well as people I’ve never encountered.  My common humanity statements tend to focus mostly around transportation and service, such as “Just like me, you lead a busy life and want to get where you’re going with as little disruption as possible.” and “Just like me, sometimes you make a mistake.”  I end with the mantra.

Compassion for everyone in the United States.  Typically I do a quick scan of the country, gathering up in my thoughts folks up New England, across the northern part of the country, including Alaska, down the west coast, eastward through the southern part of the country, back up to Massachusetts then across the heartland and over to Hawaii. My common humanity focus has brought me such peace in these trying political times, with statements like,

  • Just like me, you have strong personal and political values.
  • Just like me, you want to be heard and respected.
  • Just like me, you want to earn a living wage and have adequate health care.
  • Just like me, you want freedom from struggling to make ends meet.
  • Just like me…

Despite radically different ways of being in the world, focusing on our commonalities has helped me reduce the divide and be so much more understanding.  I don’t have to see those with whom my values may be antithetical as my enemy.

Compassion for everyone in the world. I begin by gathering people from large swaths of land, Europe, the Middle East, Africa, Russia, China, India, the rest of Asia, Australia, all the island nations, Canada, US, Mexico, Central America, South America.  As I do, I think about what’s going on in that part of the world.  My common humanity statements reflect the soul-crushing suffering of the world:

  • Just like me, you want to be free from war.
  • Just like me, you want to be free from poverty.
  • Just like me, you want to be free from hunger and have adequate safe drinking water.
  • Just like me, you want a safe and secure place to live.
  • Just like me, you want to be free from abuse and exploitation.
  • Just like me, you want to feel safe and secure physically, emotionally, sexually, financially.
  • Just like me, you want to be free from hypervigilance.
  • Just like me…

Sometimes I spend a very long time on this list.  Doing so has really brought me significantly closer to the devastating conditions under which far too many live every day of their lives. I end with the mantra.

Ending with a focus on gratitude really sets my mind in the right direction for the day.  A focus on gratitude has been shown to have significant wellness benefits, although it takes a bit longer than meditation for them to appear.  Positive effects from meditation tend to be seen within 30 days, while the benefits from a gratitude practice tend to take 120 days to manifest.

I must meditate first thing after I wake, else I’ll never find the time for it.  What I’m doing has really been working for me.  I’m grateful to Renee, the CCT instructor, and to all I’ve taken the class with for their insight and inspiration.


Multiple Milestones Achieved

Over the last year (since modifying my inserts), I’ve worked diligently to increase my walking distance and become more independent of my scooter.  Two new milestones are in line with increased mobility.  A third milestone is starting a daily meditation practice.

  1.  Socially Scooter Free.  I began by becoming independent of my scooter in almost all social activities, reserving its use to running errands, where standing in line and walking distances are still problematic for me.  The one exception was ushering at the theatre.  I’m happy to say I’m finally able to usher without the use of my scooter.  The issue was not being able to stand for 30+ minutes.  Since Dec 20, for three performances at two different theatres, I’ve been able to use a chair to sit when I’m not assisting folks with finding their seats.  I used to be outside the doors handing out programs while seated on my scooter.  It’s so much more fun being inside and being a full fledged usher.  I do have to be careful not to overdo it though, as I did have one instance where I ended up with my foot somewhat inflamed, resulting in pain with each step and limited walking for a few days.
  2.  Activity Tracking Goals.  I’m doing another fibromyalgia study.  In part, I have to wear a Fitbit for a week before each of three fMRIs.  With limited mobility, I didn’t expect a Fitbit to make much difference to me, but I was wrong.  I was amazed to find out how much I walk.  On days when I go out in the evening to a social event, I almost always walk 4000 steps.  I thought I walked maybe 2000 steps/day, so 4000 was a pleasant surprise, given that 10000 steps is often cited as a goal for fully mobile folks.  I liked the Fitbit so much, I bought my own (a Garmin Vivosmart HR).  Now, on days when I don’t go out, I walk my hallways (my building is a block long) to try to hit 4000.  I’m unable to do the 4000 several consecutive days in a row without getting too fatigued and/or in too much pain, but gamification has sucked me in!
  3.  Daily Meditation Practice.  From October to December 2016, I took an eight week course:  Cultivating Compassion.  I was feeling stressed and thought starting a daily meditation practice might help.  It was a fantastic class (so good I’m taking it again).  During the course, I was only meditating about three to five times a week.  Since it ended, however, I’ve been meditating daily.  I downloaded and daily use an app (Insight Timer) to track my meditations.  On Friday, I’d meditated thirty consecutive days, averaging 35 minutes daily.  The only way I’ve been able to do this is by doing it first thing when I wake up.  If I start my day, I’ll never get back to it.

Writing this has reminded me I should finish my 2016 Year in Review before 2017 gets too far underway…

Intro to Watercolor class, Charlestown Library

Over the weekend, I was pleased to discover several art classes offered at public libraries throughout Boston.  Yesterday I went to the first of four classes offered by local artist, Elisa Solignac, at the Charlestown Public Library.  Lest anyone think I might have some drawing ability (at least not without instruction), this class demonstrated my lack of innate ability.   It’s a good thing I’m teachable.

We started with a couple of drawing exercises.  After repeatedly telling us to take a close look at the still life she’d composed, she covered it and asked us to draw it from memory.  I have no clue as to the purpose of that exercise, unless perhaps it was to see how we drew something we couldn’t see.

Drawing the still life from memory.  My attempt at creating folds in the cover cloth is pretty hilarious.  The items are floating above the cloth, and I have no idea why everything is so small. 

The next exercise was one of my favorite types of exercises:  we were to draw the still life without looking at the paper.  I often seem to do better when I’m looking at the form rather than the paper.  The exercise works well if you’re drawing a single object–e.g. a hand or model–but not so much for a multi-item still life.

Drawing without looking at the paper.  The draping of the cloth is the best of all attempts.  There’s more perspective in the table legs too. 

We were then told to paint the composition.  The only instruction we were given is that light blue and purple are useful for shadows when something is white.  I wouldn’t expect a beginning watercolor to feature so much white (table cover and bowl were both white and the bottle was clear) and multi-level no less.

1st watercolor attempt — that blue blob at the bottom doesn’t belong there and my attempt at fabric folds on the left side was a complete failure.  There’s also no sense of perspective identifying the table as such.  There’s maybe a hint of it being multi-level.  I didn’t even attempt to paint a white bowl on a white cloth.
With some instruction, this might have turned into a decent piece.  I like how the clear part of the glass bottle turned out.  The table cover definitely needs work.  My attempt to use blue and purple to highlight the cover folds and create perspective was a big fail.

I was really looking forward to the class but left kind of frustrated.  Unfortunately there was no instruction.  I heard someone comment to another that when they took the same class last year with the same instructor, at the end everyone felt they got at least one thing from the class, as if that was a consolation.  I won’t be able to make the next class; whether or not I return for the final two classes remains in the air.  At least I learned one thing…I’m seriously in need of instruction on perspective!

Up next in about an hour…figure drawing with Elle!

Self portrait drawing class

Last year, I took a six week art class that covered a different medium each week.  This year, the class is back, but it’s open-ended so we have more time to devote to each medium.  I love doing art, but I’ve never had formal training and have no clue what I’m doing.  I used to believe I wasn’t creative at all; at least, that’s no longer the case.  I would’ve also told you I totally suck at art, but I’m coming to believe that’s not the case either.  It’s amazing what a little instruction has been able to do to those beliefs.  I now believe with instruction and practice, I might find I’m pretty decent.  I’m gong to record the journey in this blog.

The last two weeks we’ve been focusing on portrait drawing, especially lights and darks.  We began by outlining the whites in a series of black and white portraits.  We then used tracing paper over a face to color in the dark and light spaces.

Traced lights and darks of face

I didn’t do this exercise correctly.  I was supposed to trace the darkest and whitest space.  I did the darks, but instead of doing the white, I did the intermediate shades.  What isn’t traced in are the whites.  It still shows the contrast, though not as clearly as if I’d done it correctly.

We then moved on to a series of handouts showing the proportions of the face and how to draw each element.  These handouts have been crucial in helping me, though my noses are still WAY too big.

The next exercise was to scratch out the whites of our face, using a mirror, on a sheet of black coated paper with a special tool.  Being my first attempt at a face, I wanted to attempt to draw it first then move on to the black paper, but the instructor really wanted to see what it would look like as a first attempt, so I abandoned the drawing attempt and went on to the black paper. It wasn’t until I added the whites of the eyes that it looked anything like a face.

The final exercise of week one was to complete the other half of a face.  My proportions are off in relation to the other half, but overall I thought it wasn’t half bad for a first attempt:

Finish the face

In week two, we did a series of 5-15 minute self portraits, each with a different focus. First, we did a 5 minute drawing of the face (you can really see the problems with my nose proportions here) followed by a quick drawing on black paper with colored chalk focusing on the whites of the face.

The next two exercises were my favorite, though I definitely didn’t expect them to be.  We covered the paper with charcoal then used a charcoal pencil and eraser.  The first attempt was ten minutes and the second fifteen.

None of these look like me, but at least they they could look like someone.  Everyone, most especially I, was impressed with my final attempt.  With only three hours of instruction and limited time to work on each drawing, I’m very happy with my progress.   I should take some time to see what I can do.  How long might it take me to get something that actually resembles my face?

For the last half-hour, the class focus shifted to gesture drawing.  Again we only had a few minutes for each drawing.  My basic shapes were all drawn without looking at the paper, focusing on the outline of the model.  Elle wanted to see what we’d do with no instruction.  Next week, we’ll learn about anatomy and figures.  I had a bit of an advantage here, as about 15 years ago, I attended a weekend long camping retreat called, “Art without Walls,” that included some quick gesture drawing.

Finally here’s the drawings of everyone in the class.

Class self-portaits studies
Class gesture drawings


Cut. It. Out.

Since my car accident in 2002, I’ve been walking on the permanently dislocated 2nd and 3rd metatarsals of my right foot, creating pain with each step.  If I walk too far, i.e. more than a couple of blocks, the tissue around the bones gets severely inflamed for a couple of weeks, making any walking nearly impossible due to pain.  For the last few years, I’ve been on a quest to find an orthotic that will increase my mobility. I’ve gone through several attempts, without much success. A few months ago I received yet another orthotic. The new podiatrist told me it would have a cutout for my toes to relieve the pressure. I was excited about this new possibility and hopeful it would increase my mobility. However, when I received the orthotic in January, the “cutout” turned out to be a barely distinguishable indentation which did nothing. Well, it did one thing, it gave me an idea!

What if I actually cut out the pressure points on my current orthotic? Might having no pressure on the bones increase my mobility? I took an old orthotic with pressure points clearly marked and cut out the small area around those marks. I had no clue what would happen. I didn’t know if the structural integrity of the orthotic would fail. I didn’t know if no support would make things worse. But it seemed like a reasonable test, given that the orthotic at this point was pretty useless. I started with a small hole. It felt better, so I increased the size of the hole. It felt even better! I increased it even further and cut out secondary pressure points. Bingo! I’m now walking without any pressure on my deformed toes.

So my problem is solved right? It’s never that easy. While I’ve been able to increase my walking distance from a couple of blocks to over 1/2 mile, my overall pain level (mostly in my back but some in my legs) has also increased, sometimes to severe levels. It’s been bad enough I’ve had to wear my TENS unit at times. And then there’s standing. Standing has always been more difficult than walking. It may have something to do with constant pressure vs. rotating pressure through each step. I asked my rheumatologist about it once. He agreed that standing was difficult, and told me not to do it. That wasn’t much help. Part of the problem seems to be deconditioning from not having stood for more than a few minutes at a time since 2002. A couple of years ago I went through another series of PT to try to increase my mobility. It didn’t help much, in part because the basic exercises, such as bridging, significantly increased my pain and muscle spasms. I guess it’s time to try again, to figure out how to do basic reconditioning exercises without increasing my pain.

Despite the pain, I have been walking and standing more. I’ve reached the point of being mostly independent of my scooter for social outings. The major exception right now is going to the theater. Every few weeks I usher in exchange for free tickets. To be independent of my scooter at the theatre, I’d have to be able to stand for 30 to 45 minutes. I’m definitely not there yet. Along the same lines, I’ve found that having to wait in line is still too much for me. I walked to CVS to pick up a prescription the other day and had to stand in line for almost half an hour; I thought I was going to pass out from the pain by the time I got home. It really is two steps forward and one step back. There are so many places I can now walk to, but once I get there, I can’t stand in line. This means I continue to be scooter bound for just about all errands.

Of course, I still haven’t shown my solution to any medical providers.  I’m hopeful they’ll approve and won’t have concerns.  If all goes well, I’m hoping my makeshift solution will provide providers with a template towards making my next pair of orthodics.

My current goal is to be able to stand while ushering. I’m currently doing a combination of sitting and standing, but to fully reach my goal, I think I’ll have to go back to PT. Reaching this goal would not only make me completely independent my scooter for social outings, it should go a long way towards independence of my scooter in general.  Complete independence from my scooter is still a long ways off though.  I figure I’d have to be able to walk two to three miles and stand for a few hours before I could be declared completely independent.  As far off as that seems, I remain hopeful and continue to work toward that much larger goal.

Despite progressing at a glacial pace, I’m grateful, amazed and thrilled that after 14 years, I am still recovering!  Changes can’t be seen from day to day or even month to month, but look at me every six months or so and there’s almost always some improvement!

UPDATE:  Duh!  I’m unsure how I forgot this…For the first time since my car accident, I’ve been regularly going down stairs step-over-step!  After 14 years of either going down sideways or looking incredibly spastic attempting to go down step-over-step, the last form of “looking disabled” (at least when I don’t have my scooter) is hopefully a thing of the past.  I’d been told all along that my difficulty going downstairs wasn’t just about my foot; it was also about my knee and hip that were also injured in the accident.  Yet mysteriously and magically, after eliminating the pressure on my bones, I’m now going downstairs without a problem.

Independence comes in many forms

As I was doing what most would consider to be routine chores today, I was thinking about how independence comes in many forms. There’s a difference between wanting someone to clean your house and needing someone to do so. Since my car accident in 2002, I’ve needed someone to clean my apartment. Every time I have to find a new PCA, I try my best to do things on my own, but until recently it’s been to no avail. After about three weeks, I’m usually so overwhelmed by not being able to be independent that I break down and hire a new PCA. Since April however, I’ve been able to maintain my apartment on my own. This is a major accomplishment and sense of independence for me!

When I moved back to a one bedroom about a year ago, I knew I was better.  When I last lived in a one bedroom apartment in 2010, I had about 25 hours per week of PCA assistance.  Life had been getting progressively worse in 2010.  After lots of consideration, I moved into a two bedroom apartment and got a live-in PCA.  2013 saw such a change in my health thanks to Baclofen that I was able to move back to a one bedroom in June 2014.  From 25 hours per week (which included personal care like helping me wash my hair and back due to muscle spasms, etc.) until 2010 to a live-in PCA (with me doing my own personal care) until 2014 to having a PCA just three hours per week (to do the really painful things like changing linen, laundry, vacuuming, etc.) until April 2015 to doing everything on my own has been quite a change.  Using a couple of assistive devices, like a wedge to prop up the corner of the mattress so I can change my linens easier or a little collapsible camping stool so I don’t have to bend and twist to do laundry,  I’m achieving a sense of independence that neither I nor my medical providers imagined possible.

To be able to do things when and how I want them done is a freedom and a sense of independence most people take for granted. It’s so new for me however that I’m actually documenting what I do and when I do it.  You can’t imagine how nice it is to document accomplishments and not just symptoms. I knew I was getting better at a glacial pace, but the last couple of months I’ve seen just how much better I am, even when day to day I might have more pain or fatigue (especially the last month).  It takes me a lot longer than three hours to do what the PCA did, probably more like 3×3 hours, but I’m doing it. It’s not perfect, it’s not fast, but it’s mine.  And that’s what I’m celebrating this Independence Day.

Such a fine line between what I can and can’t do

For the last several months, I’ve been taking an aqua kickboxing class on Mondays.  I was initially surprised that I was able to complete the entire class.  After twelve years of not being able to exercise, I’ve been back to the YMCA for less than a year.  I expected to have to go slower than the class, but oddly enough I’ve been able to keep up without feeling fatigued, sore or out of breath.  Even though it’s in the pool, I still have to wear water shoes with added insoles to moderate the pain in my right foot.  It’s been wonderful.

I typically rest my foot on Tuesday.  Then I take the T sans scooter to Panera in Porter Square on Wednesdays for gaming.  I’ve been doing this without issue for several months.

Yesterday (Tuesday) I decided to go for a very short walk.  I researched distances and chose to walk to Cumberland St., .2 miles from my apartment and half way to the Prudential Center.  I figured I’d get there and want to keep going, but I knew I had to progress slowly.  It seems not much farther than I walk on Wednesdays.  I was SO wrong!  I should have turned around as soon as my foot pain increased, but I’m so accustomed to ignoring the pain that I went the distance.  On the way back, I reached the dreaded “inflamed” stage on the ball of my right foot.  I can tell when I overdo it because it initially feels like I have a blister (but I don’t), then the pain grows and grows.  I was limping most of the way back.  I had to stop a couple of times because the pain was so bad.

It’s the next morning.  I’m still limping around the apartment, as the ball of my right foot is definitely inflamed.  It could be up to a week before I’m back to the level of foot pain I normally tolerate.  I HATE THIS!  I’m probably going to have to take my scooter to Panera tonight.

UPDATE:  My foot still hurts a lot, but I’m taking the T.  It’s really a borderline call.  I hope I don’t regret that decision.