Full Circle

My hands 

Have served me well

My hands

Found their way over piano and flute keys to make beautiful music

Brought music into my soul

Left those keys when there was an unexplained loss of feeling in my fingers  

My hands 

Carried coffee cups through parking lots, into work

Reached out and steadied me by touching walls when I lost my balance or tripped

Held a walking stick to steady me instead of holding a coffee cup... the day I realized I needed a new way to walk into work, without a coffee cup

My hands

Pushed a baby stroller when my daughter was young, as a way to transport her safely while I walked

Gripped a walker and pushed on the walker’s brakes when I needed more balance than one walking stick could give me, and to transport my very young daughter who liked to get a ride

Learned how to transport me via wheelchair when a wheelchair became the beautiful way I could live my life, including with my daughter sitting on my lap

Continued to grip walker handles, sometimes only for a few steps and many times when it was more about holding my body up than about giving me balance

My hands

Maneuvered crutches when my teenage daughter coaxed me to take a few steps away from the wall, into the large sea of the floor, to convince me that I no longer needed to hang onto every wall

Gripped walking sticks when I transitioned away from my walker because I had found my balance again

Alternated holding one walking stick when I transitioned from two walking sticks to one

My hands

Have reached for water, reached toward walls

Have pulled me through water, pulled me toward walls

of the swimming pool as I strengthened my core over the last few years

My hands 

Now hold walking sticks in the air as I challenge myself to keep walking without letting the walking sticks touch the ground

Now want to reach out as a matter of habit when I walk around my house

Now no longer need to reach out around the house because I have found my balance

My hands

Are unsure what to do as I stand without assistance

Are unclear what to do as I start to navigate the world without assistance

Find themselves awkwardly dangling themselves in the air 

My hands

Wonder if they someday will carry coffee cups across a parking lot

My hands

Have returned to those piano and flute keys because I can feel my fingers again  

Now find their way over the keys to make beautiful music 

Bring music into my soul 

My hands

Bring

Peace

Nature in Boston

Until this past October, I hadn't spent much time in Boston and it was somewhat of a mystery city. Then my daughter got admitted, with a scholarship, to Boston Conservatory. At that moment, when she was admitted, it became clear that no other school was in the running - this was the dream school. She and my husband went to visit to confirm she would like Boston, and done!! In September, off she went.

In October and again in May, I was able to visit her in Boston: in October with my mom, and in May with my husband. While we were visiting her, we also got to see parts of Boston, either with her when she had time, or on our own. I have learned that Boston is full of young people (college central), must be the doodle dog capital of the world, is abounding with different coffee cafes (not just Starbucks), and much more. Its subway system, which people call the T, makes Boston a walkable city - no need for a car. So while Boston is expensive, at least we didn't have to drive.

We walked so many places - from near where Boston Conservatory is, to the North End (Italian), the South End, Cambridge (right next to Boston), and more. Here are some of my favorite places where we walked through nature right in the middle of the wonderful city.

Parks are always my favorite - anywhere. Next to each other right in the middle of Boston are the Boston Public Gardens and the Boston Commons. One of my favorite days was spent walking through the Boston Commons, then up a huge hill to the capital, then down the hill and through the winding paths of the Public Gardens. In October, the leaves were changing colors. In May, green was everywhere. The Public Gardens have little boats called "swan boats" that take people around a somewhat small body of water in the middle of the park - there are pretty views of the garden and the outline of the city from the boats. The gardens are prettier in the spring - there were tulips everywhere in May. Even though it was cold due to the obnoxious wind which seemed to follow us from Colorado to Boston, the tulips didn't seem to mind. They were arranged in big blocks of colors - one area of red, another of white, another of yellow, and so on - perfectly set in rows which almost lined the park paths. In addition to all the green and the tulips, many of the trees have flowers in May - it is a big contrast to Colorado where things are still pretty brown in early May. A place where everyone with kids seems to go in the Public Gardens is a spot with a bunch of duck statues lined up from tallest duck to shortest duck. Kids play on and around the ducks, which are famous in Boston, and seemingly every kid's parents take many photos of their kid(s) with the ducks. Not to be left out of the fun, adults also want their picture taken with the ducks. As I was trying to set up a selfie with the ducks, someone volunteered to take my picture with them. I guess I can check that box - picture with duck statues!

While the Public Gardens has a path that winds through various views of water, over bridges, by the ducks, and so on, the Boston Commons has what seems to be more of a main path through the park, with a few offshoots for things like a softball field, tennis courts, statues, and gazebos - it feels more local. In May, probably because we were at the gardens on the weekend, there were food carts, some entertainment (a guy singing while playing a number of instruments), and a lot more people. People seemed very happy to be enjoying all that the parks had to offer.

Another area we visited briefly in May was the arboretum, near Harvard. It's an area of many different types of trees, flowers, things that are green. It's peaceful - next to a road, but down so the noise of the road falls away. We spent the morning in the arboretum on our last day in Boston, taking the T to a location nearby. There are so many paths to walk, and we do want to return to explore more. It's a place where one could spend a whole day and there are maps showing where things are located throughout the park. It was a bit rainy when we were there, but our time there had the least amount of rain of the day, so we could casually stroll through a paved path one way, and a mulch path on the way back. When a person needs calm, the arboretum is a great place to go. In Boston, I tended to say that "name that calm place" would be an excellent place to read a book, and we joked that I could come up with a book-reading site ranking system. We also joked that I needed to return to these places with my books instead of just talking about it.

A garden area very near to the Boston Conservatory campus is named The Back Bay Fens - it's basically on the way to Fenway Park (historic baseball stadium) from campus, and we found ourselves there a few times. It's a community garden where different people seem to have small plots where they can work and spend time, again right next to a busy road, but somehow the noise of the city fades. Some plots are beautiful. Other plots, nearer to the back, look like they have potential. I wonder what these small plots are like in the summer and imagine they are beautiful.

Lastly, there's the beach. While October and May are not the best times to swim in the ocean, the beaches are still there. We visited a beach in May. It was a cool day and almost no one was there. The tide didn't change much, so there were no huge waves to see, but instead it was a calm scene. As a kid, I remember collecting shells the few times we visited a beach and collecting random shells remains something I love to do. Since there were so few people, it meant that all the shells were there for me to explore. I did come home with a number of them. One of the great things about using walking sticks is that you can poke at things like shells, or move shells on top of the sand, to determine whether they are worth picking up.

The ability to get where I needed to go in Boston was critical to how much I enjoyed exploring the city; being able to spend my energy walking around the parks instead of walking to the parks was important. The subway system (the T) there is impressive. Not many subway stops were missing an elevator which was great.  In addition, like what I experienced in NYC, people in Boston did not feel the need to comment on Bart (my walker), my walking sticks, my ability to climb stairs when an elevator was absent. There were no offers of prayers for me by random people, and when help was needed, it just happened, without a production, without a grand ceremony. Bonus: people actually let me push buttons that open automatic doors instead of leaping in front of me to hit buttons. There was a natural feeling to it all - when at a restaurant, there was a natural flow to where my walker would go - it was not a big deal. I didn't catch people looking at my walker - people looked at me. It was very different than other places, and I loved it. I got to be fully independent. 

I'm thankful to my daughter for showing us how to navigate Boston - things were easier when she was with us. We did get to go on the swan boats with her, see the tulips with her, and she introduced us to the Back Bay Fens. Watching my daughter comfortably navigate the city made me feel she really does belong there. I'm excited to go back to visit, to see some of these places again, and to find new places to explore. Boston seems to have endless exploring possibilities. And in May, there are flowers on trees everywhere - it's fantastic. 

Peace.

Easter joy

There are some things you never forget - random things that stick in your mind forever. 

One Easter morning when I was in college, I went on a run. I was so excited to go on this specific run because I _could_run at the time, and I wasn’t always able to run in college. 

It was a cool, clear morning, and I was headed around a very gradual turn on a country road. 

A car drove by me and and as it passed me, the woman who was driving yelled out in the most cheerful voice “Happy Easter!!”

It made me smile. And whenever I get to Easter, that memory always comes back and makes me smile. 

Happy Easter - may you smile and feel joy!!

Peace. 

Finding Unexpected Joy

I'm resurrecting my blog!! I haven't written regularly in some time, but lately I have a lot of thoughts going through my mind, and then a few people said they missed my blog.... so here is the first entry of my resurrected blog.

I hesitate in writing this specific post because it is very personal, but I might as well go all out in my blog's resurrection. I suppose in writing this, I hope there is some off chance that someone may see this content and realize there is hope for them, or for someone they know, because I have been told that my problem is a relatively common problem, but that most people quit before they realize they can be helped. It has been tough for me mentally, realizing that if this had been addressed years ago, I could have had much different and better experiences in life. But at least I know now.

The truth, or the problem, is that I have always had extreme anxiety when performing, whether it be piano, flute, singing, public speaking, work presentations, church singing solos, and any other situation when I am doing this stuff alone and not with a group. When I am part of a band, a choir, a group at work…. then I don't have very much anxiety. But alone, I can freeze completely right before I am to begin, or I can freeze in the middle of something, or I can shake, and even if I am not frozen or shaking, I still feel like a deer in headlights. 

It is also true, and a definite problem, that throughout my life, I have been told that by doing more presentations, performing more, and being prepared to present something or perform something, that naturally the freezes I have will eventually go away. But over the course of my life, these freezes haven't gone away and, in fact, they have only been getting worse - the more I present, the more I perform, the more I do these things, the worse they get. Add heart palpitations and why do I continue to torture myself in this way? 

Presentations and performances have always been things I challenge myself to do, and they have never been fun. I've been following the thought process that if I volunteer enough, I will get better. And I don't like to quit either, so I shake, my voice shakes, my mind goes blank, my heart races. And then  I engage in a negative post-presentation self-destruction "technique" called performance bashing that only serves to fuel the same anxiety the next time I have to perform or present something. 

But there is a good ending to this - or I anticipate there will be a good ending because someone finally told me these experiences aren't normal and that there is help!! I think the kind of help I am getting is relatively new - I don't recall ever hearing of this type of thing growing up, and I think if it had existed, someone would easily have pulled me aside and talked to me about it. 

So how did I discover help? I have been taking voice lessons for a few years,  and once mentioned my freezing and nervousness to my voice coach. Without pausing, she said, “Oh, you just need to talk to Jon - he can fix that.” And that began a new journey, one of acknowledging who I am, identifying triggers, looking into the whys of these triggers. But it isn't quite as simple as "Jon can fix that," because I've been doing the same thing for my whole life. Instead of a quick fix, I've been on a deep search for answers, for reasons. It hasn't been easy; at times it is emotionally intense and draining, and yet going through this has also been accompanied by happiness.

How do we break cycles? In my case, I'm working through stages of dealing with anxiety. I'm recognizing that when my mind goes blank, my brain thinks I am in danger and gets stuck there. As a start, I have to break that danger feeling; if I can do that, I have to breathe. If I can breathe, then I can think.... and so on. 

And while I work on strategies outside of presentations, when I am not frozen, the hope is to apply those strategies when I get to the frozen state, or to stop myself before I get to being frozen.

Why has this been emotionally intense and draining? First, I'm almost 50 - I've lived my whole life using strategies that didn't work, now realizing this could have been stopped at a much younger age. It's been many years of self-torture that I haven't enjoyed, and along with that, the joy that comes with performing has largely been absent. It's also been emotionally intense and draining because I want to know why - why am I like this, but not in all situations? Why do I have these problems? Did something cause this? Yes and no - it's been an intense search. And I am grateful that I have been able to do this searching.

I have also found joy in performing with a group. While I did have a bit of joy in the past, it hasn't been like what I experienced recently, when all of a sudden I was performing with a group and realized I haven't had this much fun performing - that was its own intense moment.

In writing all of this, acknowledging the somewhat painful process of finding a way to joy, I wonder how many other people like me are out there? I've had this since I was a kid - I assume kids out there today have this same problem, and they are being told to just keep presenting, just be prepared, and eventually everything will be ok. What if someone realized it isn't going to be ok to keep doing the same thing again and again; what if someone realized this in kids struggling; what if those struggling kids got help and found joy? What if someone realized the teenager in speech class needed more than repeated speeches to get better? What if someone realized the college student who struggled with presentations had given plenty or presentations, so their nervousness was due to something else that could be fixed? 

I don't work with kids much at all. Maybe someone will read this, see a kid, a teenager, a college student, or someone else who is struggling, and can reach out to help them. Maybe this can lead to other people being helped through anxiety. In this journey, my greatest hope is that others get help with anxiety as kids, teenagers, college students... at younger ages, so they can experience the joy I have found at almost 50 years old.

Peace.

MS Walk 2022

It is already the time of year when I am getting ready for the MS Walk!! The yearly MS Walk is May 7 in Denver's City Park – it’s in-person again (or virtual if one wants to do that).

Here is the link where you can donate to support me in the MS Walk:

https://mssociety.donordrive.com/participant/147676

Money raised goes to research toward a cure for MS as well as for programs for people with MS, their families, and friends.  Every donation, large or small, helps!!

My life with MS since the virtual 2021 MS Walk:

I have kept swimming – in fact, in 2021 I made a goal to swim 100 miles and I reached that goal in December. I’ve been told I stand and walk straighter now, and that is from swimming. I also got back to skiing after a year off, and this year was able to ski, standing up, for half-days which was exciting. My ski instructor, who has tethers attached my skis to help me ski, told me that I was making my own turns, even though I couldn’t feel myself making my own turns. I do remember another time, when I started to be able to lift my foot again, randomly, and I remember not being able to feel that at first (but now I can), so this seems like a similar thing. Maybe next year I will feel that I am making the turns myself. There is always hope.

 And this year, additional humor is helpful:

• I’m not getting younger, part 1: While simply taking off my ski boot one afternoon, my right upper arm made a loud “Pop!!” Sudden, excruciating pain followed the “Pop!!” and did not go away, but I made it home even though reaching for the steering wheel seemed to correlate with pain and tears the whole way home. Yes, it is true – I skied all day with no problems, but it was the taking off of the ski boot… “Pop!!” I am slowly improving and have been told I have an “unstable bicep.” This has nothing to do with MS except that I do use my arms more than the average person to compensate for my not-as-strong-as-I-would-like legs.
• I’m not getting younger, part 2: After 2 years of right knee pain, I went to see a doctor about that pain, had an MRI, and was told my right knee is not in good shape (that’s the short version). The good news was that physical therapy could help!! Recently my physical therapist said “Your right quad is not strong enough for you to be able to bend your knee when you walk.” Most people know that using the word “not” with me is probably just going to result in me trying to prove them wrong. So, in true Beth style, I have figured out how to walk with a bent right knee, and my knee is feeling much better. This does have to do with MS – I continue to get stronger.
• I’m not getting younger, part 3: it’s a story of a cat who wanted food and was incessantly meowing, so I tried to hurry to get the food. Result: the iPad escaped the counter and landed on my right foot. Ouch!! Did the cat care? Of course not. He is not a small cat and was still hungry. The iPad was fine, the cat was fed, and I survived. This has to do with MS in the sense an iPad landing directly on my foot caused my foot to have spasms  – a symptom of MS – for a long time.

 Yes, I am still taking the miracle walking medicine that only seems to work really well for a few people with MS – and I am one of those people. My Bioness devices which have helped me walk a lot, over many years, aren’t used much – I only need one for my right leg now, and only when I have to walk a long way. I’m mostly walking with nothing (around the house), 1 or 2 hiking sticks, or my walker. I suppose my wheelchair is a bit lonely.

More walking in Boston!! Lori got a scholarship to the Boston Conservatory to study musical theatre and started this fall. Dave helped her move, my mom and I visited her in October, and Dave and I are going visit her in late April/early May. Boston is a great city to walk!! In October, I spent a whole day walking through the parks there – it was beautiful. I have wanted to spend a whole day just walking through parks for a long time. From our Boston trip, I know that I can walk far, day or night, wind or no wind, up and down hills. I enjoyed it so much.

Treatments for MS have continued to improve over the years, and I still hope for a day when there is no MS. In the meantime, I am incredibly grateful for the last 10+ years where I have gone from wheelchair, to walker, to hiking sticks, to no assistance; from leaning to standing straight; from having trouble writing to being able to write again; and much more.  

Love and peace to all.

Beth