Discovering Bridges

We are fortunate to live in a day and time where the internet has served to bridge the vast expanses of our world, and where sharing with one another is possible.

As social creatures, humans need to feel that they are a part of a community.  When we share, and others share in return, we find common ground.  We find togetherness; we find a community.

There are many such communities on the web.  There are many such communities right here that require no Wi-Fi connection.

How connected we feel has very little to do with our cable/internet provider, however.  Our level of connection is directly proportionate to how much we put out there of ourselves for others.  How much we share and give of ourselves, is often related to how connected we feel to those around us.

The more freely we share, the more intimate the level of connections we feel.  The more openly we listen and hear, the more intimate the level of connections we feel.

In all honesty, I believe we are all connected.  There is more common about us than not, no matter how unique we each are and no matter how unique each of our life circumstances has been up to this point.

We miss making connections because we have a tendency to make snap judgments or perceive others in terms of black and white, good or bad.  We all have good in us, just as we all have the capacity for bad.  That doesn’t change the basic premise that there is always common ground, there is always a connection waiting to be discovered.

Part of my challenge for the last several days has been to see those opportunities for common ground, to see positives where I may not otherwise look for them.  Not everyone “gets” just how much I believe it is possible to find them, but I have yet to be wrong about this particular thing.

It has actually been an honor to take the time and to be present enough to find those positives.  I have seen them in every arena of my life, and in doing so, feel even more connected to the people in my world.

Day 27 and still very grateful for each of you.

Perception and Compromise

One of my students asked in my introductory psychology course if she could shift her perception of homework to make it fun.  I explained that if she dreaded her homework and felt that it was a horrible experience, then her perception of it would be dreadful.

However, if she were to view higher education as an opportunity, as an opportunity to learn new information, then yes, she could indeed shift her perception of her homework to be more pleasant.  The trick is to see what you will gain (knowledge, better job, sense of accomplishment, etc.) by spending the time doing it, rather than focusing on what you lose (time with family, energy, sleep, etc.).

I find myself shifting my perception of my illness, and the choices I have to make to better manage my symptoms, while still earning a living and enjoying my life.  If I were to filter my choices through the lens of what I am unable to do, and focus only on those things, I would certainly be cranky and miserable.

The frustration could even become all-consuming, as I believe it has, at various points in my decade-plus with chronic, progressive illness.

While I am intermittently frustrated in recent months, I feel quite a bit more comfortable in my decisions about what I choose to do and not do.

Sometimes those decisions require a shift in my perception because it isn’t that I don’t want to do whatever it is, but I find that I am able to make them with less effort and more comfort in knowing I am choosing what is best for me, Duke, and my health in the long-term.

Living our lives is a series of compromises and shifting of priorities.  When we have to shift priorities and make compromises, we also have to shift our perception of all of that.

If I find myself starting sentences with, “I cannot do…because of my dammed legs…” rather than, “I could do that, but the physical toll would not be worth it in my estimation of what I need” then I know I need to shift my perception.  I am grateful for what I am able to do at this point, and it is worth whatever compromises I have to make.

I want to work.  I love both of my jobs, and am lucky that I am paid to do what I love to do.  I want to be able to do my physical therapy, which will keep me more mobile and active in the long-term with this illness.  I want to make sure that Duke has the best quality of life I can give  him, as he lives out his last years.

I want to be able to know that I can do all the basics of keeping up the house, the laundry, grocery shopping, etc.  It is very important to me.  I have to take good care of myself and manage the limited amount of energy I have each day, each week, to make sure that I can meet these priorities.

So, what is the compromise or the trade-off?  Often there is not much energy or mobility left after meeting them.  Therefore, I am working more, simplifying more, blogging less, am planning ahead more, I am seeing many of you in person less often, I am canceling more and committing less, and making choices to forgo social and other activities that decrease my ability to meet those priorities.

It has taken a while for my own perception of these differences to shift and to find my own level of comfort in it.  But, it is certainly nice to be there!

 

 

Switching It Up: DP Weekly Challenge

A line had developed for early voting, so there were twenty or more people in a staggered line down the hallway at the courthouse.  Emergency people were responding to a medical crisis inside the polling area, so everyone else who was waiting to vote had to stay in the main hall.

I spotted a young woman about half-way back in the line.  She was no ordinary woman as she seemed to have drawn a crowd around her in the line.  She was sitting in one of those motorized wheelchairs with the words Jazzy on the side.

I couldn’t imagine what could be wrong with her that she needed that chair as I watched her almost develop her own following with people who were initially strangers.

Her dark hair kept getting pushed back from her face by her hands as she talked.  I could see her eyes sparkling in the dimly lit hall and she seemed to be talking about something very interesting to the others.   I stood watching her in awe for several minutes.

Her new fans were completely focused on her words and I wondered how she was able to have such social confidence, especially considering she was in a wheelchair.

As a poll volunteer, I am really just supposed to stand at my post at the entrance to the polling area, and hand out information if asked.  I was intrigued by this woman and needed some excuse to go over there to the line.

Considering it made my heart start beating out of my chest.  The sweat began to bead on my forehead.  I am not social.  Thinking about it can make me have a panic attack, but there is something about this woman that makes me want to do it anyway.

I decided to leave my post, and offer her some information about the amendments on the ballot as my excuse.

As I approach her, the crowd around her seems to part noticing that I am there.  I think I might have stopped breathing as I got closer.  She noticed me too and stopped talking when I excused my interruption.  My throat was so dry all the sudden, so my words came out like a sputter—slowly and almost loudly, I spoke, using all my effort just to get them said.

“Would you like…information on, er, uh, the…amendments on…the ballot?”  I finally get out.

She was gracious when she thanked me and turned me down.  She said she had already researched them before coming out to vote.  Of course she had, I thought.  She was even more beautiful up close than she was from afar, and I lingered with the crowd around her for just a moment.  My knees were shaking and I needed a drink of water, so I returned to my post.

 ——————

This week’s Daily Post writing challenge (hosted by the lovely WordPress Dino Rara) asked us to write something from someone else’s perspective.

I was the woman in the wheelchair in real life.  My perception of that man was that he was being patronizing by singling me out from the line of voters—this was my fellow voters’ perception as well.  He spoke slowly and loudly to me as if sitting in a wheelchair meant that I had diminished cognitive capacities.

It was a rather horrible experience for me, but one that I turned into a teaching moment for the folks standing around me.  I shared with them I was living at the local homeless program, about my illness, about stem cell research, about the amendments on the ballot, etc.

They spent the rest of the time looking out for how I was treated through the voting line.  When they were taking walking people ahead of me, they charged right in to right the wrong to make sure I was treated with respect.  I didn’t need them to do that, but they needed to do it.

I like the shift in perspective for this event in my life.  It is certainly an alternative to how I experienced it.  This was the first scenario that popped into my mind when considering this challenge, although there are certainly many others.

 

 

 

Misery is Optional

A while back while having lunch with friends, I said something like, “The misery and struggle part of this story is optional.”    We were discussing my difficulty “wasting” energy wondering what each reduction in dose of baclofen would bring, along with my various attempts to change that.  I had only had a couple of reductions at the time, but I heard what I said and have repeated it to myself often.

When I made the difficult decision to remove the intrathecal baclofen pump, I wanted it to be on my terms.  I made the decision in the absence of fear, but knew the process of slowly reducing the dose would be a challenge.  I am also very aware that not having the pump itself will be a challenge.

I made several other decisions along with the major decision as well.  I decided that I would handle this change in mobility with more grace than I did when the illness first caused the rapid decline.

I decided that no matter how much I felt the need to resist what was necessary in this process, I would do everything I could to surrender instead.  I decided to cooperate with my fears and anxieties while not allowing them to limit me.

Misery and the perception of a struggle as I experience all this are optional.  I can choose those, just as easily as I can choose to surrender to the is-ness of the experience.

Perceiving the struggle has been my modus operandi most of my life, so changing that is taking a lot of work on my part.  I am making great progress because I am continuing to remind myself—and you—that we have a choice in the matter.

I find that being miserable or appearing miserable serves no purpose in this or any other process.  I am allowing myself to grieve the losses each week, but that doesn’t mean I have to be miserable about those losses.  I am allowing myself to be sad and anxious, while moving through it without letting it limit me.

Early in the pump drama, I made a statement that I could affect more change and make a greater impact in the world with the pump.  I don’t believe that now.  I think those limitations were perceived and not real.  I could let the absence of the pump limit me.  I certainly have that option.  I do not intend to choose that, however.

Since proclaiming that misery is optional at lunch that day, I have not misused as much energy each week on what ifs.  So far, I think I am balancing the need to surrender to what is necessary for safe mobility pretty well with the need to continue to try to rehabilitate each week.  I am quite proud of my efforts so far.

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The Past, the Present and Perception

Everything we see in our day-to-day life  is seen through the lens of the past.  In fact, our brain’s perceptual system is wired to interpret everything based on what we already know.

I teach this to my students, and each class, I am able to understand another level of my own thoughts, beliefs and behavior through our discussions of the topic.

I appreciate the irony that this has been the week we discuss this topic.  When we are present and aware, we can override our brain’s natural tendency to put things in past perspective.

I have shared some about my attempts to stay present as I wait to see what happens next with each baclofen dose decrease.

All I have to go on to attempt to anticipate or predict what is next, is the past, which quite frankly is only somewhat relevant.

What I know about the past without the pump has allowed me to prepare so that whatever level of mobility I avoid unnecessary injuries.  That is important and is the grounding I need to move forward.  That should be that.

But it hasn’t been.  I have continued to spin it around in my mind.  I have tried to remember each stage of the increase of the dose when this pump was implanted to have a better idea.  That isn’t grounding for me.  I am missing right now.

Monday, my neurologist summed it up nicely when we were talking about my pump doctor’s reluctance to continue the decreases.  “We cannot know what will happen until it happens,” he said.

When I relayed this to my pump doctor Tuesday, he laughed.

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Dogs, Babies and Baclofen

I watched in amazement as she was navigating her environment in all the ways she can, and doing it in the fastest way she can.  Always on the move when she is awake, she is curious, watching everything, trying to figure everything out, and is nearly ready to walk.

There are few better ways to be fully present than to be with an active nine-month-old.

A perfect way to spend the day after my intrathecal baclofen dose reduction, I thought.

The little bean’s mom and I caught up on our lives in between redirecting, distracting and her nap.

But nothing happened by the time it has happened with the previous decreases.

I went home at 4pm to be with my dogs through the evening storm, and after it was over, things were different.

I was stiffer, but I wasn’t sure how that was going to affect how I would go about the day I had planned for today.

At 25% less of a dose of intrathecal baclofen,  it was clear that my gait was wider and I was having to lift up the left leg to get it to go forward without tripping or dragging it.

I still didn’t really know what that meant, but I went to bed early.  When I awoke this morning, I could feel the tiny muscles in both of my feet hurting from the tightness.  I couldn’t tell if I could propel off the right foot, but was sure that the left leg and foot situation had gotten worse.

Because I could still get around inside my house, I decided to brave a dog walk with my cane to better assess things.

The dogs are troopers and always adapt quickly, and I had no reservations about trying to do the walk.  It was a beautiful morning and cooler than usual for late July.

Holy moly.  Walking was HARD.  Where the cane used to speed me up, it now just gets me forward enough to say I am going forward.  I was certain we were on the same block for an hour, even though it was minutes.

The dogs are used to a faster pace and slow means that they can smell everywhere.  Their smelling was a great “cover” for me because we were moving so slowly already.

Needless to say, nothing I did requiring movement happened very quickly today.  I didn’t perceive slowing down to be a bad thing, however.  I couldn’t get ahead of myself.  I can still drive, get around my place and even get up and down from the floor with my dogs.

Through all of this, there have been no fires, nor potential arsonists.  I caught up with a couple of friends I hadn’t seen since my Big Girl Panty Party, got my legs in a pool to ease the tightness, worked with my editor friend on my manuscript, and am formulating my plan for taking Duke to work at HEP tomorrow.

I am not worrying about the decrease next week.  And, I have not even been tempted to buy anything in bulk.

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