Sharing the lessons along the way…

Archive for the ‘surrender’ Category

The Magic of Rainbows and Unicorns

me and dad lightning hero 4-10-16

“Nobody cares how much you know, until they know how much you care.”~ Theodore Roosevelt

I have spent my lifetime trying to explain my seeming compulsion to serve to others, but have never found adequate words or descriptions to do justice to how I have always felt.

Last night, a thirteen-year-old struggled to find those same words.  This young man was awarded the Tampa Bay Lightning Community Hero award and was chosen to speak at an event where all 220 community heroes, from the last five years, were being honored for their passion and service.

When he shared about the healing power of giving back and how he had been pain-free for two years from his juvenile arthritis, I could feel his compulsion to serve from far back in the room at my table.  I thought, this kid and I could sit quietly in a room together and totally “get” where the other was coming from.

I am not sure there weren’t 218 others and their guests in the room thinking the same thing or at  least, being appreciative of his ability to share it that way.  Feeling a purpose and a drive to do something outside of ourselves is service and the benefits of it have the potential to be a life changer.

There is a healing power to giving and serving others, and to doing so from the heart and from the depths of our being.  It is the real deal—seriously, unicorns, rainbows and fairy dust kind of stuff you cannot imagine is possible.

It is far more magical when it is focused, ego-less and fiery with passion.  And even more magical when you can balance the service with self-care so that fire doesn’t burn itself out along the way.

After the program concluded and all the heroes left their respective tables to go back into the lobby for coffee and desert, I had only two thoughts in mind.  One was that I really needed to find that kid, shake his hand, and say something encouraging.  The second was that I needed to hug the amazing woman who helped behind the scenes to orchestrate all the hero events.

I found the young man in the line of people who also wanted to hug her before leaving.  I had no real encouraging or profound words as I shook his hand, but I did thank him and tell him to be sure to take care of himself too as he continued with his service.

The Tampa Bay Lightning Foundation has changed so many lives as a result of the unrestricted funding they give in honor of each Community Hero award.  There were 220 heroes in five years and I believe there were nearly 350 different nonprofit organizations that benefited from those award dollars.  I am proud and humbled to be among those honored.

If you ever find yourself in need of inspiration, click here and simply watch or read the stories of all the passionate people living in the Tampa Bay area!

 

 

 

 

 

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Slow down, no, wait, It’s Time

I haven’t been in much of a hurry at all since I was stopped in my tracks and moving a maximum of 5 miles per hour in a motorized wheelchair.  I was that hurried person before getting ill and found those folks a bit frustrating and insensitive in my slowed state.

In recent months (like this entire calendar year), it would appear that the universe isn’t comfortable with my comfort zone preference of a pace.  Opportunities appear, I take them and run with them (figuratively of course) and before I know it, another opportunity appears to grow the first one, then another…

I am no longer stuck in the 5 miles per hour maximum speed of years ago.  But I often feel pensive or reticent to do otherwise because it took so long to wrap my head around that speed in the first place.  And have I ever unwrapped my head from it?  Is that even possible once it has happened?

At the same time, I am aware that there is a beautifully synchronistic design to this life.  Eleven or twelve years ago, I didn’t truly know it (or maybe I didn’t trust it).  While reticent, I am going with the synchronistic flow of the opportunities and periodically sitting back and saying, “Holy Cow!” or “Whoa!” or something that conveys the message that I need to please slow this down a minute so I can catch up to it.

Maybe catching up to it is moot.  The barriers to growth and expansion are quickly dissolving—except for that 5-mile an hour maximum Tawny thinking (which I am doing my best to override, but feel it is worth a mention).

It’s almost surreal to me to think about it as if I am not some character in someone else’s story line.  Except that it isn’t someone else’s story line.  It is mine.  I can try to minimize it all I want, but I am fully aware in the core of my being the gravity of it.  The gravity of it keeps me focused, keeps me grounded and keeps me moving forward.

Synchronicity happens (which would make a fabulous bumper sticker) and it would not if we were not fully prepared for it.  I cannot imagine a story line that doesn’t have me fully prepared for whatever comes next, in whatever time frame, despite my reticence.

I am fully allowed to feel reticence or pensiveness during the process, but my preference would be to simply embrace all of it.  It is happening as it is.  It’s coming to fruition how it is coming, and there is no reason to stay in 5-mile an hour mode forever.  If it is time to move faster, well then, I reckon I will have to move faster.Ruby by the water's edge

Surprise!

I reckon the sporadic blogger is back!

tawny jack in box

My body needed some extra time to recover from my outpatient surgery experience last week, so I gave myself permission to take the week off from posting.  Did you miss me?

The surgery went well from what I understand, and both the anesthesiologist and doctor made decisions that were proactive so that neither the clonus nor spasticity was an issue while I was out.  The full intubation seems to have irritated my upper GI tract, so it is slowly recuperating along with the rest of me.

Meanwhile, I started the second phase of the increase in the medication my neurologist gave me to try to help the clonus (the repetitive jerking of muscle groups).  It is going to take me some time to get used to my brain being hijacked.

I started the increase Saturday, so I have a couple of weeks to know just how hijacked my brain will be on a permanent basis.  I am having some pretty whack and vivid dreams too.  I cannot yet tell a difference in the clonus symptoms.  I will keep you posted.

Modifying my activity level continues to feel like a struggle.  I am working hard on letting go of others’ expectations of my activity level and outdated ones of my own.  That will be another blog at another time.

For today, I just wanted to let you know that I know it has been a while since I posted and to give you a quickie update.

I will update you more soon.  Instead of calling myself the sporadic blogger, I think I will change it to the surprise blogger! 😉

 

 

 

 

Walker Groundhog Day

groundhog day

They say that the best predictor of the future is the past. I do not know who they are, but they probably knew that yesterday’s walker experience at HEP would look very much like last week’s.  Monday must be Walker Groundhog Day in my world.

Imagine pushing the walker along and every crevice in the sidewalk, every rug, every tiny little pebble stops you suddenly. Now add a dog into the mix.  The idea for the new walker was to keep my right arm flat on the platform and strapped in.

If I had strapped my arm in, I would have fallen face first four times within my first hour there. I spent more time and effort picking it up with my left hand to move it where it needed to go, than pushing it straight ahead.

Edison, my physical therapist, suggested that I conserve energy while I’m at work with the power chair. He said pushing a walker takes more energy than walking alone.

Last Monday I realized that, but here I thought that a different walker might produce a different outcome.

I guess the joke’s on me.

Wednesday, when Duke and I return to HEP, we are borrowing back that red power chair. Since I can’t walk my dogs with the cane anymore, I have also surrendered to walking them with the power chair.

Part of my brain battles with the notion of using a power chair for any purpose, quite honestly. The other part, probably the part that registers the wrist pain, knows that this is what I have to do for now.

Clearly I have found my limit. I’m not likely to stop testing my limits, but I am more likely to try harder to listen to my body.

I realize I say that periodically. I struggle with this one often. The conditions of my body have changed countless times in the past three years alone. It is hard to keep up with what my limits are, and what is functional pain versus chronic pain that is no longer functional.

In an attempt to cut myself some slack here, I will go with the argument that I am less than seven weeks after a surgery that removed my pump. It hasn’t been that long ago that my body was receiving the intrathecal baclofen to manage my symptoms, so really this is all new.

Before last week, this was a race against time, or maybe it was a race with time. Because it hasn’t been that long ago since my symptoms were managed, I have muscle memory on my side. In my efforts to keep that intact, I did too much too soon.

I’m more okay today with doing what I have to do, even if that means using a power wheelchair while I rehab my wrist. Sometimes, I have to arrive at surrender more than once the hard way. I guess it doesn’t matter how you get there, as long as you get there.

Now I just have to stay there long enough!

The Anti-Fan Club Leader Resigns

I have never been a fan of inconsistency, unpredictability and the like.  In fact, I started the anti-fan club for such things very early in my life.  Perhaps that is why the universe has tried to teach me to tolerate ambiguity over and over again.

At this point in my life, I know I do one or two levels better than just tolerating the inconsistency and unpredictability that is a given as I live this life.

I was pleased with my ability to cope with it, until now.

Now, I am sure I can do better.  The unpredictability and unmanageability of the nerve pain in my torso is the latest teachable moment.  While I may not show it all the time when it has happened recently, I can assure you that inside, it unglues me.

Unpredictable  collaboration  (detail)

Unpredictable collaboration (detail) (Photo credit: Topsy@Waygood)

Most of that is because I am the anti-fan club leader and automatically become frustrated, agitated and angry that I have no control over it.

When the torso burning starts back up, it is as  if each instance of unpredictability and lack of control gets rolled up into the feelings I have about it.  I hadn’t really put all of it together until now.

The negative feelings get directed at the pain because I don’t know what makes it happen and I cannot figure it out.  The same pattern emerged as I was slowly losing control over my mobility at the onset of my illness.  That definitely wasn’t helpful then.

Yes, understanding it is my way of controlling some aspect of what is otherwise uncontrollable.  So is shifting my perception of whatever it is.  It is how I empower myself and take charge of my life and my health. Now that I understand that there is more old stuff to let go of, I can work on doing just that.

As I let go of it, I can stop coming unglued, relinquish my anti-fan club leader position, and stop attaching it to the pain.  I can’t cooperate or better understand the pain with all of this other crap in the way.

Misery is Optional

photo (19)

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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