Through the noise

Last Christmas Eve I wrote about finding silence with my cup of coffee each morning, and thinking of my godparents and how they were great role models for me, and how last Christmas was the first Christmas without both of them.

I really did love my morning coffee and quiet time. After an iron deficiency problem was identified, triggered by my diet of too much coffee and dairy, not enough foods containing iron, and resulting antacids to combat the too much coffee, I gave up coffee, which meant no more antacids......  But I miss my period of silence in the morning and instead find myself trying to get a bit more sleep and then rushing to get ready.

Earlier this week I had a somewhat panicked feeling - a friend of mine decided to stop what had become absolutely miserable chemo treatments and choose quality of life over quantity, which means that she is now in hospice.  I hadn't heard from her in more than the usual time period in which I hear from her, but I didn't want to bother her either, knowing there is a ton of fatigue and pain right now.  I finally did reach out and there she was - sending me a message back that she is ok, has pain and fatigue, but it is being controlled as much as possible.  I struggle with this - not wanting to ever lose my friend, but yet knowing that life never goes on eternally here on earth.  But I have my friend for this Christmas, while I remember loss last Christmas.

Advent does tend to have this strange cycle for me - we should experience joy, and some years I do, and yet other years not so much, and this year seems to be a mix.

This year my daughter started doing competitive dancing which makes me feel always on the go to something, between that, working, and trying to keep the house so we can still see the floor.  And in December, with the Nutcracker, she had plenty of dance rehearsals.

In between work, dance, and other things, somehow I found time to get presents this year.  That was a challenge.

Physically, I am doing very well.  I keep improving, thanks to Ampyra and physical therapy.  It might be invisible to most, because improvements tend to be in functional areas, like I can now pump gas without feeling like I am going to fall.  I have started to climb steps without needing someone to always lift my legs for me.  When I go to concerts this really gives great concern to people who do not know me and tell me I can always sit where there are no steps.  What?!!  Give me steps - they are fun!  And the view from higher is often better than the lower view.

All of this stuff happening is noise.  As I was preparing a devotion for church council last week, I got to the prayer part, where I was to say a prayer.  And I didn't feel like filling a prayer with words.  So I found silence in the midst of prayer.  And it hit me that silence can be found there - finding those moments to pray, one can simply insert silence.  And silence has its own way of being beautiful.

Merry Christmas, and as you enjoy great joy accompanied by the noise of spending time with family and friends, may you also find moments or times of silence where there is so often

Peace.

Vulnerable

Our election is done.  When voting many people reflected on the first time they voted.  The first time I voted was in 1992 for Bill Clinton.  Soon after he was elected, I was diagnosed with MS.  I don't remember much from that time other than going to the doctor a lot, but I do remember that was my first vote.

This election cycle has been much different.  I wonder the elements were the same but if I was in the middle of college now with doctors trying to figure out what was wrong with me, if I would have been invested in this election at all.  I really wonder.

Back in 1992, my only issue really was that I couldn't run, walking was sometimes difficult, and I slept 10-11 hours a night because I was exhausted.

This election cycle was different because permission was given to show hatred to many groups of people, including people with disabilities.  Right now people are saying we need to move on to acceptance, that we need to be positive, that we need to address inclusion by speaking out and with our actions, and the list continues.  And I am not there.  This is not one of my positive posts.  But I feel the need to write it so someday I can look back and see how I felt - so others can look back and see feelings that were out there perhaps.

After permission was given to mock people with disabilities, things started to change.  I use the accessible parking spots.  More noticeably in the past few months people have parked in those spots as drop-off spots, or just parked there because they felt like it, without a disability hangtag or license plate. There has been an increase in the number of times this occurs, but also in how people react.  Several times when I have got my wheelchair out, people who were parked in those spots just looked at me as if to say, "you can't do anything if I park here."  And that is just wrong.

There are also many people who are nice.  People who know me know I like to be as independent as possible and generally leave me alone when I am navigating things.  People near where I work, who use the bank in the building where I work and thus do not know me, always want to help.  The other day a guy was coming toward my car as I was standing up from my wheelchair.  He just grabbed it and asked how I wanted it put in the car.  On occasional days, this does not bother me.  In fact, that day I didn't feel like putting Nemo, the wheelchair, in my car, so it was great what he did.

With the behavior concerning the parking spots, there is other strange behavior that makes me feel uneasy and is hard to describe.  With the election done, I am left feeling unsafe and vulnerable.  I want people to understand that many people feel this way and while we would like to move on and work toward inclusion, at the same time we feel we must be invisible.  Doing these things together does not work well.  So I am left with invisible.  I want to crawl in a hole.

A candidate moves forward and becomes president.  Nothing may happen between him and people with disabilities.  What is so troublesome is knowing that a large group of people followed this person and were given permission to behave in ways that make people like me feel unsafe.  What is so disheartening is knowing a large number of people accepted that.  And that is where I get stuck.

I suppose by writing this blog I am working toward being inclusive, even though I am going to say I feel a bit scared in writing it.  You see, threatening language by supporters of our next president told me "you are just afraid that he is going to kill all of you."  No, that is not it.  I not afraid of him.  I am afraid of the people who made such mean-spirited comments who have been given permission to do so.  And I don't know how to go forward from there.

The good news is that I continue to walk more, I continue to do things I could not do for a long time, I can write with a pencil.  And I want to stay on this track.  So maybe I stay in my bubble and focus on the things I can control, knowing that God is with me through it all.

But please look out for us during this time - not just people with disabilities, but also so many other minority groups that are marginalized.  Do not expect us to get to acceptance.  I suppose grace enters there.

Peace.

The Letter

A few weeks go I got a letter, saying that to keep receiving Ampyra, I needed to do  timed 25 foot walking test.  My response was... what?!! 

We are in a time when costs of prescriptions are being questioned.  But it seems to me that the patient is the one who is "targeted" - a medicine is expensive, so make patients prove they really need the medicine...   or whenever possible, find a cheaper alternative. This is concerning - whether we stick in the long-term with insurance, or whether we go to some kind of universal healthcare - decisions to use costly medicines will be questioned - and patients will find themselves in a place where they just want something to work, and when they find that something - they want to stay on it and not have to prove it works.

Here are excerpts from the letter I wrote  regarding all this.

My Story

In 2010, Ampyra became available and I was one of the first patients to go on it with the help and advice of my physician.  "Disease modifying therapies" (DMTs) have not worked for me and I have tried many of them.  Ampyra works for a small subset of people with MS and there are a few people for whom Ampyra has astonishing results.  I am one of those people.  Within a day I noticed differences.  I have not had any relapses in the six years I have been on Ampyra.  No one really knows why, but a clue could be that my lesions are only in my spine and Ampyra works to connect potassium channels. Ampyra is my miracle drug and my improvements, while on this drug, still astonish me and many others who know me to this day. 

I returned as a patient to my physician in 2016.  I have not had good experiences, as a patient, since being back, and it all surrounds pharmaceuticals. One of those experiences has been getting an ambiguous letter fthat I needed to do a walking test for Ampyra.  I have had a baseline walking test, so my walking improvement on Ampyra can't be measured, and a baseline at 6 years is not a baseline. I did have do a timed test for me back in 2010, so I know exactly how slow I was back then and how much I have improved, both in speed but also in endurance.  In fact, I wouldn't have even qualified to receive Ampyra given the guidelines  for a baseline walking test which is concerning.

It is not just in walking where I have had improvements: My balance is much better since I started taking Ampyra. I have noticed this, but other people have also noticed, telling me that I used to cling to chairs for balance.  I used to have a lot of difficulty writing and was working on speech recognition software as an alternative, but now I can write with a pen or pencil, without any special grips, and people can actually read my writing. I imagine professionals may doubt this, but small studies, like the one I have attached for your reference, support Ampyra being associated with improved hand dexterity.  You may or may not know this, but for the subset of us for whom Ampyra works, there is a “kick in” effect that occurs 15-20 minutes after taking it.  This effect also occurs again about three hours after taking it and is when I am at my strongest.

Of course there are very few of us who have such great results, but I have shared my successes with the media, the drug company, and the MS Society, for which articles have been written. 

My hope is that you will find my story enlightening and useful, and you take it seriously because others who have taken the time to know my story are excited at each success I have.

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My reaction to getting an ambiguous letter, in my second month back as a member and patient, felt threatening and confusing because it stated that the Neurology department required me to do a walking test because I use the prescription Ampyra. Welcome back? That certainly didn’t feel like a welcome.

No one knows my story behind Ampyra and to be told there is a need to think of how it is important to use every member’s money wisely when I called to ask questions appeared judgmental and felt threatening. I just had an appointment where it was assessed that I am doing well.  Now more was wanted.

I understand the need to do certain screening tests for people, but perhaps a bit of homework should be done before sending ambiguous letters to unsuspecting patients.  It has been a daunting journey for me to be a member again and I’m concerned because I am doing really well in terms of my health because of Ampyra.  Did anyone even open my medical record to see my most recent visit?  Is this being done this for research?  What are the guidelines?  I was told there are “all these new guidelines” that must be followed and it sounded, as if, the guidelines are coming from outside.  I called the drug company, only to learn that the guidelines are not being made by the FDA, so I’m assuming they are insurance guidelines. 

Clinical trials for Ampyra measured a very finite period of time for improvements and post-marketing studies have been limited to showing that improvements are maintained strictly for walking. What is the goal for the walking test?  I have not been given specifics on how this test will be done, other than that I need to do three, 25 foot walks. 

My story has been on the news, the drug company tracks my great success with Ampyra, I am in constant contact with the MS Society to tell them my story, and I have been keeping a blog about my continued successes which is followed by people all over the world. Those who have taken the time to listen, read, or talk to me know me, know my story. Yet to measure success, only my walking speed will be measured and that doesn’t encapsulate “my story” even though my walking has greatly improved, both in speed and distance, while I have been on Ampyra. 

Ampyra was approved for walking. I know when a drug company applies for approval with the FDA, they must limit what they request for approval and once approved, the drug company cannot market other benefits the drug may provide to patients unless those go through the rigorous testing process.  Therefore, Ampyra is approved only for walking even though it benefits so much more for a small group of patients, such as me, leading more to the individualized approach to medicine that is gaining traction lately.

Finally, while thre is a focus on walking speed, the only drug found to help with my migraines is not covered.  I have tried numerous medicines; most recently w medications, both as off-label with no studies on migraines, which have been completely ineffective, leading me to have 2-day, debilitating migraines which is a nightmare.  This is not quality care and greatly concerns me and my family.

Thank you for your time in reading my story.  I hope it will help in working with patients like me, especially when we re new.

Peace.

Elliott

Once upon a time, a mother and father welcomed their baby daughter into the world.  They named her Elizabeth, but for most of her life she was known as Beth.

Beth's parents were history professors and as such, enjoyed traveling to various places around the world to study history.  When Beth was only six months old, her parents went to England as part of their sabbatical (period of leave granted to professors every 7 or so years).  They took Beth and her older brother with them.

While in England, Beth got sick, developing a fever of 105.  Beth's mother was somewhat frantic.  Surprisingly, the doctors who saw Beth were not frantic at all.  Because of this, Beth's parents purchased private health insurance to try to get help for Beth beyond what was covered as part of the English system.  Once a private doctor saw Beth, she was put on antibiotics and quickly got better.  To this day, Beth knows her life was saved in this manner.

Many years later, Beth was diagnosed with multiple sclerosis, or MS.  Beth tried to understand this.  She was so young to get this diagnosis - why?  Beth's search led her to discover that infants who traveled to a certain latitude where they were not born were more susceptible to MS.  Further, Beth discovered that many people with MS recall, years prior to their diagnosis, getting very sick with a fever.  Beth put this combination together - she was very sick in England.  She wondered what if she had received more timely care and had not been sick?  Beth doesn't tend to live much in the "what if?" land, but she keeps this in her mind.

Beth's great aunt and uncle lived in Toronto, Canada.  Beth has fond memories of visiting them, and what a great person her uncle was.  Beth's uncle was diagnosed with prostate cancer at a relatively young age.  Because he lived in Canada, he had a long wait time for additional tests regarding his prostate cancer.  By the time he had tests done, it was too late and the cancer had spread.  He died because it was too late to receive treatment.  Years later, a close relative of Beth's also developed prostate cancer.  He sought aggressive treatment in the US.  He has lived 8 years since being diagnosed - 7 years longer than Beth's great uncle.

Once diagnosed with MS, Beth wasn't sure what to do with her life.  She was only 20 and in college.  She got a double major in math and honors economics.  And Beth knew she wanted her career centered around healthcare.  Beth sent over 20 letters to healthcare organizations throughout the US, asking about potential jobs.  She received many disheartening letters in response to her inquiries, until one day she received a letter from the Mayo Clinic in Minnesota.  Beth started her career at the Mayo Clinic, working in the biostatistics department as the analyst for a study on stroke prevention. Beth knew she belonged in Colorado, so after 3 years, found a job as a pharmacy analyst with Kaiser Permanente in Colorado. 

Once back in Colorado, Beth navigated through many departments within Kaiser.  She started as an analyst in the pharmacy department, found she liked a statistical software which brought her to the computer side of healthcare when it was just starting.  She spent time in the research department at Kaiser, and then more time on the computer side of healthcare, trying to figure out how data from an electronic medical record could be turned into meaningful and useful information.

But Beth liked change, so she deviated from the computer side of healthcare for about 6 years, and took a position where she was responsible for answering any questions employer groups had regarding either healthcare quality or clinical care.  These 6 years gave Beth a great knowledge of the healthcare system.  Coupled with background on the computer, or technical, side of healthcare, Beth's knowledge of healthcare was extensive.  She was told she needed to get a masters degree, which did - in public administration, but focusing on healthcare policy.  After receiving her masters degree, Beth left Kaiser for 3 years to explore the walls outside of Kaiser and to see what more she could learn of public policy.  She learned a lot during that time about differences in payments between commercial insurance, Medicare, and Medicaid.  She recently returned to the computer/technical side of Kaiser.

So you see, Beth has spent her whole career in healthcare.  Beth has also had MS for over half her life, and has a unique view from that perspective.

But Beth struggles with a problem. After almost dying as infant, spending over half her life with MS, and spending her entire career in healthcare, she doesn't feel people listen to her.  People want universal healthcare and list a bunch of reasons why. Beth tries to explain, given her background, why she doesn't feel it is a good idea.  She feels her thoughts are not heard. What she finds most painful is the fact that no one really thinks about the fact that she almost died. She also finds it painful that given her background, people still don't listen, or don't acknowledge any of what she says, despite the fact that she acknowledges what they say.  She doesn't understand why no one listens.  She doesn't understand why no one acknowledges that she very well could have died.

Who is Elliott and how is Elliott involved in this real-life story? Elliott is Pete's Dragon in a fictional story-turned Disney movie.  Beth, always a kid-at-heart, took her husband to this movie this past weekend.  Beth found herself drawn into the imaginary world and coming out of the movie consumed with Elliott.  You see, Elliott was a dragon who was invisible except to Pete and sometimes other people.  When Pete, a kid who lived with Elliott, was found, some people were interested in finding and capturing Elliot.  People did capture Elliott.  Elliott just wanted to go back to where he lived - he just wanted to be alone.  He knew the world so well and didn't want people to attack him - he wanted to live in peace.  And in the end (spoiler alert!!!!!), Elliott did just that.  He escaped from people and left to live life on his terms, invisible to humans, and valued as the dragon he is.

It's such a "Disney" story, yet Beth felt drawn to it.  If people will not listen to her, and if she feels a bit attacked, her tendency can be, at some point, to retreat away from the people causing her pain.  And so, Beth has been spending time away from the places she finds painful.  She has been spending time working, taking her daughter to many activities, and so on.  And to go back to where those people are?  Unlike Elliott, Beth will go back, painfully knowing she doesn't feel her opinions are valued, and questioning why.

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Somewhere God is in here, but I can't figure out where.  God, where are you?  Walk me through this.

Peace.

The 3 year view

On July 1, I became a member of Kaiser Permanente again, after being gone for three years.  For those who are not in the Colorado area (or another area where Kaiser is), Kaiser is a different system...  Basically there is regular insurance where you have a set of providers, pharmacies, radiology, hospitals, etc. you use.  Then if you have Kaiser it is a completely different set, but it is all linked together really well, so your medical record is all under one roof that can be seen by your primary care physician, any specialists, any pharmacists (because the pharmacies are Kaiser pharmacies).  And you can order all medications from one spot, the same spot where you can email any of your providers...  it is an integrated delivery system and after spending three years away from it, I am grateful to be back.  Note: it takes a lot of technology to link all this together.

I will miss my neurologist who is outside of Kaiser - he was one of only two neurologists I have ever liked.

So that is the background!

Today I went to see my rehab physician who I had seen for many years before I took my "explore the world" break from Kaiser (I don't know that I would encourage others to explore the world after I did so - it was confusing!).

Three years - he could look up where I had been in terms of my health from three years ago (another cool part of Kaiser!).  And then he could do the usual tests and compare.  He could put my prescriptions into the system and I can set them all up through mail order, through the same interface where I can email my physician, etc.  Cool stuff.

The tests: One test is to, while sitting, simply left up onto your heels.  I had lost this ability.  But my feet popped up!  And he pushed on my toes (to see if I could hold them up) and they didn't just go down.  It took a bit of pushing.  My grip strength is normal - I knew this because I can write with a pencil now which for those of you who have never had grip strength affected - it takes more grip strength to use a pencil.  And when seated, I could lift my legs up, which means muscles called hip flexors are working a bit.  I couldn't do this until pretty recently.  And....  and...  and... (the excitement of my new tricks!), I was sitting on an exam table and could hold my arms up and out for him to test their strength.  The exam table is a key term because I could lean back on something.  It takes core muscles to "let go" and hold your arms up.

I pointed out to him the things I couldn't do previously and though he said he thought I was correct, there wasn't the excitement generated as when I am writing this blog and smiling.

I also got to ask him which muscles, specifically, aren't working correctly and make me walk, well, in a goofy way.  And since he is a rehab doc, that is his specialty and he explained it so I understood!  I have the weak hip flexors which are basically on the top of your legs (above your quads).  But then there are muscles on the side of your legs, also by the hip flexors.  To stop my leg from swinging a bit around, those have to be stronger.  They also have to be stronger to walk straight.  And then my leaning which was one of the first things that was wrong before I was diagnosed...  those are my lower back muscles.  And that give me more understanding and direction.

Then he asked, "so why do you do all of this?"  If a random person asked me that I would tell them it is none of their business!  And I hadn't thought of it.  _Why_ do I do all of this.  And my answer just came out: "because I love it!"  I do - I really do love this stuff.  Part of it is I never thought I would improve - I thought I would continue to gradually decline.  But a larger part of it is the mindset I have been given - a stubborn runner mindset.  Once an athlete, always an athlete.  Once a runner, always a runner.

And you just never know what your body can learn to do again - like a baby learning to walk.  Never say never seems to be my theme.

Peace.

Using our gifts

This past week I was sitting in my van in front of my daughter's dance studio, knowing I had to get out and go to a meeting there.  The problem was I was in the middle of a huge storm - rain pouring, lightening everywhere.  Minutes earlier the thunder had been so strong that my van shook.  And I hate lightening.  How was I going to do this quickly?  How could I possibly move quickly enough to escape the lightening?  I opened the van door where my walker is.  Normally I would get out of the van to retrieve the walker, who I named "Bart" years ago.  But this time, with the lightening seemingly on top of me, I decided to try to pull Bart out while still seated in my van.  I reached back, grabbed Bart, and slung Bart to the ground.  Bart was still collapsed like a baby stroller so while still seated, I opened Bart.  Then I determined not to turn on my Bioness robotic devices, which send signals to my legs, until I made it past the open area of the parking lot, convincing myself the Bioness signals would attract the lightening. With all set to go, I "launched" myself out of the van, and walked a bit to the covered sidewalk where I then turned on my Bioness devices and went into the meeting.  Yes!  I made it!!

6 years ago that would not have been possible - getting Bart out of the van like that without throwing myself out at the same time... and walkng a bit without the Bioness devices or some braces on my legs.  6 years ago was the last time I went on steroids for an MS attack.  Those happened to me every few months - all of a sudden my MS symptoms would get worse.  50 feet was all I could walk and each attack made things worse because I didn't fully recover. In late July, 6 years ago, I started taking the drug called Ampyra, designed to help with walking, and since then have only made forward progress, no MS attacks, still using Bart to walk and wishing I didn't need Bart, and still dreaming of running without Bart.  In the 6 years I have regained a lot of balance which means I can pull Bart from the back seat while still sitting in the front seat. It means I can walk around a track, I can stand straight, I can go to physical therapy twice a week and walk up to 2.0mph for 16 minutes on the special treadmill there...  I am more independent.  I can also write again, having almost lost that ability, and I can ski without having my hands basically taped to the outriggers that I use to ski.  Independence.  I can wiggle my toes and when I think I am losing my balance, I can push my toes into the ground and regain that balance.  This is relatively new - using my toes for balance.  The things I didn't realize I had lost - I have so much of them back and there are probably more things.  I am stronger overall and though progress at times seems slow and I want more now, I am still making progress and that, after about 20 years of decline from attack after attack after attack, is, in my mind, when I sit back and think about it, a miracle.

Yesterday I watched some of the speeches given at Mohammad Ali's memorial service, after his recent passing.  I was struck by those and felt I related.  Billy Crystal said Ali built bridges instead of walls and that is important.  As we face things in life, it is important that we build bridges, and in my small way, I hope I do that by reaching others to tell my story.  I was talking to a friend recently about my blog, and how although in a sense it has been my diary, it has also been a mechanism to reach others to tell possibilities, along with frustrations, and to consider how I move forward, how I live life to its fullest and as Ali did, how I can build bridges by telling my own story.

I listened to what Bill Clinton said about Ali:

“He decided that he would not be ever disempowered.”  

“He decided that not his race nor his place nor the expectations of others — positive, negative, or otherwise — would strip from him the power to write his own story.”
“May not be able to run across the ring anymore. May not be able to dodge everybody and exhaust everybody. And he’s bigger than ever because he’s a free man of faith sharing the gifts we all have.  We should honor him by letting our gifts go among the world.”


When I shook Bill Clinton's hand in meeting him once, and couldn't think of anything to say, perhaps saying nothing was fine.  Perhaps he sees people with their own gifts, just as he saw Ali continuing to give throughout his life.  We all do have gifts to share, and we all can build bridges.

And so in this time, these 6 years, I think I have been sharing my gift - the gift to tell my story of the seemingly impossible - how I started from nothing and have come so far.  This blog shares my story.  And I hope that moving forward, I have more to tell, and more bridges to build.

Peace.

MS Walk 2016

The letter I sent to everyone who donated last year.  Progress update and request for donations!  Thanks!

Dear Family and Friends,

Feel free to forward this email!  It’s time for the 2016 MS Walk!!! You donated last year and thank you so much for that!

The MS Walk this year is Saturday, April 30, in Denver’s City Park, and this year our team will start walking at 8am sharp, before the heat!  (They are adding a running race and our team is going right with that race because I am once a runner, always a runner, even if walking!) 

I am asking you, again, to sponsor me in the walk so that one of these days I really can run, outside of my dreams.  Here is the link where you can make an online donation (and on it there is a video with me in it): http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=27195

You can also donate by sending a check (made out to the MS Society) and mail it to me at

                Beth Newsom

                20860 Sussex Ct.

                Parker, CO  80138

You can also walk at 8am sharp with our team!  We are going to have fun walking at 8am before the heat hits!!!  Email me back if you want to join the team.  It will be fun and we will be done early.

What progress has been made this year for attacking MS?  On a personal level, I’m still not running…  but I am walking at 2.0mph on the treadmill 2 times a week, wearing a cooling towel and having a fan blowing directly on my face to keep me from getting hot, because heat destroys me.  I have been doing this for 2 years now and started at only .5mph.  And I stood straight (without bending) at my physical therapy evaluation last week for the first time!

Perhaps my biggest progress this year was made in my ability to write.  I was close to losing the ability to write almost 6 years ago when I started taking Ampyra (the medication for which the MS Society was integral in providing funding in early clinical trials)  Ampyra is supposed to help with walking.  But Ampyra helps other muscles, like hand muscles.  The feelings of getting something back that you didn’t ever think you would lose cannot be described in words.  There are times I look at my writing now and think, Wow!  That looks really good and was so easy!  To go along with that, I sit-ski and used to have my hands attached to parts called outriggers.  This year, my ski instructor all of a sudden asked me why I use the special gloves that attach my hands in place.  He tested my grip strength, rolled his eyes, and said, "You don't need these!"  I have grip strength again!

So many improvements are invisible, but I continue to improve.  Someone asked me how many times I had fallen recently and I gave them a strange look - fallen?  Oh yes, I used to fall.  I used to fall a lot.  I haven't fallen for a very long time.  Life is good.

Beyond my personal life, the MS Society uses funds from the walk to help advance research, but also to provide programs and support to those living with MS.  Recently the MS Society partnered with Excel Energy to provide energy assistance to those with conditions like MS who cannot afford to pay for air conditioning in the summer.  This is important because people with MS cannot tolerate heat and need air-conditioning during hot summer days. (We are also walking at 8am so it won’t be as hot!)

I am looking forward to Saturday, April 30, in Denver’s City Park.  You can donate or walk with team “May You Dance” – I have been the captain of this team for quite a few years now.  If you want to walk with us, please email me as we have arranged specially to start at 8am.  In addition, personally I want to start with the runners instead of watching them cross the finish line while I wait to walk.  Once a runner, always a runner!

Remember: no gift is too small!!!  Please donate:

http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=27195

Thank you!!!

Much love,

Beth Newsom

I don't want to be here...

February 11, 1993.  Didn't want that.  Didn't want to be there.  Didn't want to hear "we think you have  MS."  Didn't want to feel like lying on the floor and curling into a ball.  Didn't want to go back and have to tell people.

Where to go?  This isn't where I intended to be.  I... had it all...  Certainties disappeared.  How could I be any use now at all?

But I went on.  I stopped playing the flute.  I sang.  I didn't run on the cross country and track teams.  I double-majored.  I did a marathon.  I kept going.  It still was horrible, to be honest.  Yes, there are many worse things.  But it still was horrible.

In moving on, I realize now that back then, when I did not feel like doing something, that is exactly when I needed to do that something.  I didn't feel like meeting with the minister on campus but something drew me there.  We prayed.  I didn't want to do that.  It sounded corny...  praying. But then, in the middle of prayer, that was where I needed to be.  That was where I found relief.

My mom, little brother, and I went on a hike.  It was misting that day.  It was a long hike.  I don't think any of us thought we would make it to the top.   Yet as 2 of us might want to quit (and not be there any longer), there was always 1 who wanted to continue.  And so we made it.  Through all of that doubt, we made it.  And it was beautiful.

Many times when I haven't felt like going to church, but have gone anyway, I find that is where I should be.  I find a message or something small that leaves me thinking, this is where I need to be.  Yesterday was actually one of those times.  It was Ash Wednesday and I was so busy that I did not want to add _going_to_church_ to my list of things to do.  But I went.  And I found my break from a day that felt too busy and chaotic.  I found peace in the midst of a day of chaos.

The same is true for physical therapy (PT) and exercising on the treadmill.  I have been at this for almost 2 years.  Whenever I feel great, the treadmill never goes  well.  But when I don't feel like going, when I don't feel like I'm going to do well?  Those are my best days.  I never see them coming and sometimes even warn the therapist that this might not go very well. 

So I continue to look.  Where don't I feel like being, but yet something is calling me?  I generally go.  In all these years, 23 since my "probable MS" diagnosis and 26 since it began...  All those places I didn't want to go and things I didn't want to do?  That's where I needed to be.  I pushed running until I couldn't take a running step.  And you never know so no, I still have not given up and never will, that one day I will run again.  I still run in my dreams and am counting that!  I continued to walk without using something to help until I was at my car one day and couldn't move.  I didn't want to do use things like walking sticks but I did.  I didn't feel like running so many days but I did because time was limited.  Can you run?  Run for me.  Tell me about it.  I love hearing running stories.  It brings me back to it.

Today. February 11.  So much has happened in 23 years.  I keep improving especially on the days I just don't want to start.  Church is my sanctuary. God is all around us.  Pay attention.  God has been holding me for 26 years of this body not working quite right.  And so, though I don't want to be at this day again, here I am.  And I am moving forward.

Peace.