The Proud Auntie T

It is not often that you meet a young person who exudes the energy that you know has the capacity to change the world.  To see such a young person have the perspective that has taken you years and a progressive motor neuron disease to cultivate is inspiring.

My niece on Leap of Faith

I am lucky enough to be related to one.  She is the horse whisperer.  She is one of the most grounded teenagers I have ever met, and she has remained grounded all throughout her high school years.

Yes, of course, she has had her stereotypical teenage moments and decisions that weren’t quite thought all the way through.  Quite frankly, I am happy about it.  It means she is relatively normal for a Swain.

She understands what is really important about a person, an animal, and everything really.  She gets it.  She gets what most people never get in their lifetime, and it is as if this came standard for her.

She is one of those people you just want to be around whether you know why or not at the time.  She isn’t afraid of a challenge and seems to seek them out to rise above them.  It should be no surprise that her first horse to show her horse whispering skills was named Leap of Faith.

Having no children of my own (save for the dogs), my niece pretty much proves that I really am a part of the Swain family (we joke a lot that I am adopted because I am so, er, um, unique). She is the kid I could only dream to have raised.

While we have rarely lived in the same state at any given time in her life thus far, she really is a lot like me.  She brings in stray dogs, cats, horses, people probably…  She never missed a beat when I was wheelchair ridden for so long.  She hiked to the top of their ridge and got me on a horse because I wanted to see if I could.

Me on Leap of Faith in 2010

If she and I were in the same state, we could be a force to be reckoned with I am certain.  For now, however, she will be the change she wishes to see in her corner of the world and I will be the change I wish to see in mine.  She wants me there and I want her here, and one of these days our here’s and there’s will be the same!

I miss a lot of the details of her life because of the distance, but I never feel disconnected from her.  I am pulling for her to affect the type of change I can only dream of at 42, and if anyone can, it is this young woman.

I am supposed to be packing and getting things ready for my dog sitters to go to WV to see her, but instead I feel the need to share that my niece rocks!

I admire her and love her for who she is and how she is with others in this life.  Saturday she graduates from high school, and in the fall, she will attend my alma mater as a freshman.  I am proud of her and so grateful that she is a part of my life!

Holy Growth, Batman!

Each day this week when I have walked my dogs, I have taken them everywhere I know a wheelchair cannot go.  We navigated the rocks to play in the intracoastal waters and went into every spot they wanted to smell or pee that was off the beaten paths of the sidewalks or the trail.

Monday morning, after frolicking in the cold waters with my dogs, I spent about thirty minutes reading through some of my old blogs.

I just did this a couple of weeks ago when the need to consider removing the pump was finally brought out into the open at my doctor’s appointment.

Since finally getting to the no fear place and making the decision to remove it, I felt I needed to revisit them.

I focused on the posts that were about the pump’s removal in 2011 and on the Lessons from the Pump.

Whoa!

I don’t mean to toot my own horn, as it did take me a while to get here, but holy growth, Batman!  I have come a long way in the nearly three years of processing the fear of not having the pump as part of my life.

I spent nearly as long processing the fears as I lived with the first pump before the problems began.  I would imagine you might even be tired of hearing about it.

Honestly, being transparent about it with you and continuing to process it all in writing has helped me tremendously.  I have written about the benefits of sharing before and can see it so very clearly now.

Each of you has played quite an important role in my growth and I want you to know how much I appreciate you being with me through it!

What does it mean?

I have been asked a few times since my last blog, “What does this decision mean?”

My best answer is simply, “I am not sure exactly.”

My bathroom mirror message.

The truth is, I have no idea what will happen once the intrathecal baclofen pump is removed.  I only have the week I had without it in 2011 as a clue.

While that wasn’t a swell time, I was able to manage.  I could hobble around my own house, use a walker in open spaces for a while and did the wheelchair for distances.

Since my body is in worse shape now than it was in 2011, I have to presume that it might take a bit more of my own physical therapy to be there.

I still have many questions for two of my doctors.  I need to know if we can wean me down on the baclofen dose in the pump leading up to its removal, and I need to know what the plan might be for medication management in absence of the pump’s magical delivery system.

Since I cannot get appointments any time soon to ask these questions, I am going to try my hand at going through nurses and phone messages.  As I know more, I will share more.

In the meantime, I am making preparations.  I finally have my own washer and dryer right here at home.  I have a friend who is going to reinforce my wheelchair ramp out back.  I have to sand and paint my raised potty chair, along with various other little things.

I plan to continue to walk my dogs, but will need to get a power wheelchair or scooter to do so.  There are some logistical things to figure out also since I am not likely going to be able to drive my car.

All of that being said, an opportunity awaits to see how well I can rehabilitate my body once the pump is out.  I am ready!

A Decision without Fear

I never imagined writing this one.  In fact, there was a time not all that long ago where I could not even think about what I am about to share without being so full of fear that I was paralyzed.

There seems to come a time in most treatments of disease where the risks, side-effects and such have to be re-evaluated.  I am probably well past that time with my intrathecal baclofen pump treatment, but haven’t been ready or open to discussing it until the last few weeks.

The very doctor who helped me to fight for it a couple of years ago when the new implant was causing so much pain is the doctor who first initiated dialogue out loud.  I have been having the conversation in my head about letting go of the pump for quite a while.  It was almost a relief to have someone bring it out into the open.

For nearly a week after my appointment with him, I couldn’t really discuss it with anyone else.  I could say what he said, which was, “Tawny, at what point are you going to be willing to let this pump go?”  Discussing it with anyone required me to do many of the things I have written about in this blog.  I read over my own words about fear and through my entire fear series talking about the unhealthy relationship I knew I had with my old pump.

I worked very hard with little exercises to remove the attachment of my quality of life to this pump.  My quality of life seems to be quite hampered since this pump entered my life, and with the recent pump doctor appointment, became more so.

As the first week of processing the information came to a close, I was able to talk to several friends about it.  The more I shared, the more I realized that any decision I made would not be made in a vacuum.  My decision affects everyone in my life (including you) but particularly those closest to me.  I still have more folks to talk to in person about this decision, but I felt the need to also share it with you.

As I entered the second week of sharing and still working hard at detaching my emotions from the decision, I realized something.  I am not sure when or how, but I started to feel uncomfortable.  I wasn’t hashing out pros and cons anymore.  It seemed I had made my decision.  AND, I had no fear.

I am not afraid.  I am not afraid of life without an intrathecal baclofen pump.  I am not afraid of what I don’t know about what will happen next.  I figure the absence of fear is really what surrender feels like, and I have to say that I have never quite felt it like I am feeling it now over this decision.

There are many details to work out yet.  I see the potential opportunities within this decision, but the biggest one is allowing my body time to heal from the pump trauma.

 

 

Toilet Paper Confessions

I have wanted to write this blog for months, but some other topic has always gotten in the way.

Today, I bring you the blog about my relationship with toilet paper. My status update not long ago was “I have 31 mega rolls of toilet paper.” My friends who know me well, knew what I was really saying, which is, “I am stressssssed out!”

My relationship to toilet paper is simple really. It developed simply enough. I used to become anxious when there were fewer than four rolls within my reach from the toilet. I was bothered by this anxiety, so I worked hard and got myself to make it to having two rolls without panicking.

Last year, I realized that having a lot of toilet paper seemed to bring with it a sense of security. Then I found myself feeling like I could take on the world as long as I have my arsenal of mega rolls of toilet paper.

I figure there are far worse things than a stack of toilet paper in my bathroom, right?

When I feel overwhelmed or feel the discomfort of facing the unknown, I will always know that I have toilet paper. It is empowering during stressful times. If my brand is on sale, then I will buy toilet paper to help myself to feel better.

I share all of this to share with you that this has been a toilet paper buying week. I live in a small space, and the 29 mega rolls I have already will have to tide me over.

 

An Honorable Moment

It seems like days turn into weeks very quickly lately.  I realized this week that I hadn’t gotten to tell you about something I did earlier in the month.

I had the honor of sharing my story in front of a group of women who are a part of the Homeless Emergency Program’s (HEP) Women Who Care (WWC) giving program at their annual luncheon.

In the last six or seven years, I have found that I love having an audience with whom to share something I believe is important.  I am always nervous before it is my turn.  I always go off whatever script or plan I have prepared.

Every Introductory Psychology course I have ever taught was off script with a stomach full of butterflies.  In that regard, this day was no different.  In many other regards, it was very different.

One thing that was different for me was that I really had no idea how to condense my story into the 5 (10 maximum) minute time slot I had been given.  The other difference was that some of the folks who were at the luncheon were also folks who experienced most of my story right alongside me.

I tried to prepare for this speaking opportunity.  I wrote out version after version, but they all seemed flat and went well over my time allotment.  I printed my final version to carry around with me to my pump refill that was scheduled just before the luncheon.

I ended up having to focus on what I needed to cover with my pump doctor, leaving no time to review my printed version.  I chatted with people on the way there and before the luncheon began, so that didn’t leave me time either.  I ate my lunch and chatted with people at my table, knowing I had no idea what to say when it was my turn.

I have no idea where I started my story or what I said exactly.  I was startled when I was choked up and weepy at one point during my story, but I do not recall what part of it I was telling at the time.  I do remember thinking I needed to shift gears to be able to continue.

Afterwards, I was told that I did a great job, I made sense, it sounded organized, and that others were choked up right along with me as I spoke.  No one could tell me what I was sharing when I got weepy, but they could tell me what I was sharing when they got weepy (different parts for different people).

Often I minimize how traumatic the experience of losing everything, including my physical functioning and my dogs, was for me back then.  Particularly when I share it briefly or in passing, it is easy to gloss over the emotional side of it.

It isn’t so easy when you know the folks in the audience watched you experience it all raw at the time.

I believe it is an honor to share.  It was an honor to share at the luncheon and to meet such a diverse group of women dedicated to changing the face of homelessness.  Duke and I consider it an honor and privilege to be able to give of ourselves to the current residents at HEP as well.