Tuesday, February 11, 2020

My Parents on this day

This day. 27 years ago today. I remember being able to call my parents when I was in my doctor's office after being told I had "probable MS."

My parents. They were/are my rock.  One of my coaches told me recently that what they remembered most about my parents was the support they gave me when I was diagnosed - that they did not give up on me.

I remember when I came home for spring break shortly after that diagnosis - looking into the living room from the kitchen. I remember seeing my dad in front of the TV, which was a normal occurrence, but there was something different about his expression. It was as if he wasn't watching the TV but was thinking of something else, with a great deal of concern. I imagine he was very worried about me. He was also a runner, and a stress fracture took him out of running. Now I would be taken out of competitive running which he knew that I loved.

This is the first "anniversary" of me being diagnosed with probable MS that my dad is not here. It is the first of so many occasions when that reality will hit me - that he is not here. I tend to grieve on my own - other people won't see the tears - they are there when I am alone. Since I never saw him cry, and the closest I saw him to crying was when I was diagnosed and then came home, I think he was like me and held his emotions for when he was alone, like that day when I looked into the living room and saw him with a different look, as he was effectively alone then.

He was so proud of all of his kids. Every time I called him he knew exactly who I was.
"Hi, Dad."
"Hi, Beth."                                 
Those words are going to stick with me.

And I'll never forget Christmas Eve this past year, when I looked out as I was the assisting minister for the service - and I saw him, in the pew, looking right at me. He smiled and waved and I smiled back. He was so proud of how far I had come. I think his goal was to make it to Christmas Eve and then to Christmas, to be with his family at a time when he knew he was not well, and to smile and do the best he could to be present with us those two days.

This year, on this day, I remember my dad, his support for all I have done in life, him looking up at me on Christmas Eve as the proud father he was - I'll never forget that moment.

27 years. He saw me get worse. And he saw me get better. And we'll run together in my dreams.

Miss you, Dad.

Peace.

Friday, January 31, 2020

Memories

Dear Dad,

I now know that losing a parent is not easy. Other people who have lost their parent(s) have told me that. They have told me that we each grieve in our own way, that it goes in waves, that I need to give myself time, and on and on.

This makes me wonder how you grieved when your parents died. You never talked a lot about them. It was as if there was something of a shield there. And then later in life, you found photos and put them on a bunch of disks and made sure that each of your kids got a copy of those pictures.

What keeps running through my brain is every time I called your house. You always wanted to be the one to answer the phone, even when we were kids, and the phone always had to ring twice before you answered it. We would sit there sometimes and watch as you waited for the second ring to end before picking up the receiver.

“Hi Dad.” “Hi Beth.” That was every time I called your house as an adult and generally was looking to say hi to you and talk to Mom. Always you answered after the second ring. If you didn't answer after the second ring, I could count on you not answering because you weren't home. Predictable.

Growing up, I was the most ticklish person, ever. So you and I had a game where we would surprise each other by poking the other person in the ribs. But you always got me - easily. And I would jump. And I got you - twice - that's it. And you didn't jump at all but you did laugh. I remember those two times - I got you right next to where the phone was located (before cordless phones), where the kitchen, the family room, and two short hallways met. That was the only place I could surprise you. I wonder if that is because you were always waiting for a phone call so my poking was not anticipated.

The mail - also something you wanted to get first. You would wait for it to arrive. And your kids - we wanted to beat you to the mail. And we would even try to beat you by waiting on the lawn, out of sight, because you were inside and we were closer outside. But you still found a way to get to the mail first. Fun fact: getting the mail is now not important to me at all. Maybe that’s because there’s no race to it.

Speaking of races, we both raced. You told me your best time in the 800, which was your favorite race and my favorite race. You got taken out of running in college by a stress fracture. I got taken out due to legs not cooperating. But when I ran, you were always there to cheer - you and Mom - always. I don’t think either of you missed any of my running through high school and you both even came to a college cross-country meet of mine. And you would always yell “stride,” and I would always think, “what do you think I am doing?” The last time I went to the track was the day you were transferred into hospice. I was timing myself and all the way around the lap, I just kept thinking "stride, stride, stride." And it finally meant something! I told you that when I went to visit you that same day - that I got my personal best time that day by imagining you were telling me to stride. I may try that again.

When you were in hospice, the chaplain visited and got my brother and me to tell stories of growing up with you. There are many. Near the top of my mind was when I learned to bike - I was working on riding without training wheels, and I mastered it. I wanted that - me riding my bike without training wheels - to be your birthday present (which was only days away). But then you had to be on the roof for something and you saw me - happy early birthday. You gave your kids a lot of early birthday presents, too. If we needed something big, well, happy early birthday present!!

St. Patrick’s Day. You were a good part Irish. And that day? You never wore green on it. You thought that was such a silly American thing. I was so afraid of being pinched if I didn’t wear green. Not you. St. Patrick's Day to you was an American holiday that was silly. But I will continue to wear green on March 17.

The symphony: going to the symphony with you was the best. We did that occasionally - just the two of us - when Mom let me have her ticket. Actually, going out to dinner and getting a steak, before the symphony, was the best part of the symphony. Going to sports events was fun, too. The best part of those was cotton candy. I wonder if you knew how important the food was to me.

Speaking of food - our kitchen table. Most of the time you and Mom talked about your day. Sometimes something would happen that would be hilarious and we would all be laughing. And when it was deemed too out of control for the table, we would have to go sit by the stairs until we could stop laughing. Those times when you laughed - there weren't a lot of them - but they were memorable.

And just so you know, Dad, all those times when a light was left on upstairs when we came down for dinner, and you made one of us kids go up to see who left their light on? Well, I am not sure we always told the truth when we returned, you know, about who left their light on, because whoever did leave their light on was supposed to be the next kid to have to go upstairs the next time a light was left on. So if we went up and discovered we had left our light on, why would we admit that?

Your service is coming. One night when you were in hospice I felt the need to stay up late to find all pictures of you, for the eventual service. I was so focused. I needed the photos that night, in my mind. That’s probably why I got sick. Four hours of sleep after photo-searching was not the best idea.

But your service - we picked the hymns and I informed people how much Kleenex I would need per hymn. We have a bunch of pictures to put on poster board. The pastor is going to wear the stole of your dad’s - the one worn at all of our weddings. Now it will be worn for your service. 

We had some great times - I got that by looking at the photos - memories have been very present recently. You are constantly weaving into my life now in memories. 

"Hi, Dad." "Hi, Beth." I can still hear your voice, clearly.

And it is never easy to lose a parent. Cherishing the memories.

Peace.

Sunday, January 19, 2020

What were you going to say, Dad?

Dad, I love you.

And I am no longer sitting next to you, wondering what you are thinking.

I know you wanted to tell me what you were thinking, because three times on that day, you mouthed my name and only a slight sound came out. The day before that day, I could still hear you talk but I couldn't understand you at all. The day before that, you were still speaking and hard to understand, and you told me you were sorry about the talking - that you couldn't help it. And I knew, Dad. I told you that I knew. And before that - well, you were combative and you couldn't help it, but in that state of mind you were not in the mood to talk.

If you could have talked, what would you have said? I thanked you for saving my life. I reminded you that you held my hand when I went into surgery, and when I woke up from surgery. I told you that I saw you on Christmas Eve, when I looked out at you and you waved and smiled at me, and I smiled back. I will never forget that. And I told you that Lori likes classical music like you did. And after all of this, and several times throughout that day, the expression on your face changed. It looked like you were content. But you wanted to tell me something, and I won't know what that is and whether it was you in a different world, or something I needed to hear. So while I suppose I got to be with you so much during the last few weeks, I will never know what you were going to tell me.

And about those few weeks. I know you didn't want those few weeks. I know you didn't want to be in the hospital, but there was no choice. In the hospital, when things changed and you went into hospice, I knew you wouldn't like that either. At the hospital we were there with you. In hospice, we were there with you. We worked remotely from hospice and tried to help as much as we could. And that was strange.

I left Thursday night and told you I would be back on Friday morning. On Friday morning I decided to go to physical therapy instead of coming to see you first. After physical therapy, I drove to see you and met Mom in the lobby. She was up early! But she was up early because your baptismal journey had ended. And so we went into your room and you were still in the bed. And you were still very warm and you stayed warm. I thought you might wake up. I really did. It was as if you were still just asleep. I told you I loved you and then I sat next to you for hours, while we all came to terms with all of this and waited on next steps. Those few hours were really rough. And the whole last few weeks were rough, but during those hours it was as if someone pulled all the tears out of me. They even gave me my own kleenex box.

Then they came to take you and we waved to the mini-van that took you away.

And then we packed up and left - almost like leaving a hotel.

The whole past couple of weeks have been surreal. Things I never thought I would do, or even knew existed - I did those things. Things went too fast and at the same time I am now at home trying to get caught up on the basics like doing laundry and thinking about taking down the Christmas decorations.

About the Christmas decorations... we all seem to have them up still. It is as if time froze there - on the first day of Christmas, which was your last good day. I don't want to let that go - when the Christmas decorations come down, it's like a final stamp on something, a stamp I don't want.

And you are loved by so many - that is very clear. So many students loved your classes. The professors who worked with you are very sad. And you're my dad

So Dad, what did you want to tell me? I love you, Dad.

Peace.

Thursday, January 16, 2020

Dear Dad

I love you, Dad.

Do you remember when you saved my life? I was eating candy upstairs, which wasn't allowed (no food out of the kitchen) and a piece got lodged going down, and you just happened to be there, gave me the heimlich maneuver, and I survived.

And now I am here, and you are there - so close to me in distance. I sit next to you. I stand next to you and say "Hi Dad. It's Beth. I love you, Dad." And then I ask if you want some water. Sometimes you raise your hand and that means yes. Sometimes you don't. Sometimes you open your mouth. Sometimes your mouth is just open. Sometimes you suck on the little sponge, which holds either tea or water, and I hold it in your mouth with the stick that is attached. Most of the time you swallow the water and your face looks relieved.

Yesterday you said my name 3 times. Yesterday you said "Fine, thanks." That meant you had enough of what we offered you. I know you wanted to tell me something after I reminded you that you saved my life.

Two days ago I kissed you and said, "I love you, Dad," and you kissed me back. Yesterday you tried to kiss me back. Today you couldn't.

I am still here, Dad, and you are still there. And I wish I knew what you are thinking, what memories you are experiencing. I do notice that when we tell a story, your facial expression changes slightly, as if you heard the story. And what are you thinking?

This hurts, Dad. I want to know what you are thinking. I know this is not what you wanted. I know you probably wish we would carry on with our lives, but we can't seem to do that. We spend time in the room where you are, and we talk to you. I struggle. I really struggle. No one ever imagines that they will go from walking, to walker, to wheelchair, to walker, to walking sticks, and then watch their dad go from walking, to walker, to hospital, to hospice.

And while I struggle, and know you wouldn't want me to struggle, I hope. I hope I dream of running alongside you someday. I hope I dream that we run the 800 together, fast, that we high-five each other at the end, and that all the emotional pains I feel, and tears I cry, today, disappear and are replaced by beautiful memories of the wonderful things and times we shared.

I love you, Dad.

Wednesday, August 21, 2019

Disappointed

"I'm disappointed."

"So you're disappointed in me then."

"No. I'm just.......... disappointed."

"Then you have to be disappointed in me because you can't just be disappointed."

But you see, I am disappointed. I'm disappointed that church isn't to you what it is to me, and thus you refuse to go.

I understand that you say you will go when someone comes back. I don't know if that is really true, but I do believe that when the someone comes back, you feel that the someone understands how you feel about religion, including your doubts. That is the only part of all of this that does not disappoint me.

I'm disappointed because at some point, or maybe things built up over time, but at some point, it seems that you think that church=religion.

I'm disappointed that you won't go to church because you have large doubts about religion right now, which is totally normal, but it seems you have equated these doubts with attending church. So many have huge doubts. Basically everyone has doubts at some level.

Church does include religion, but you can listen to the sermon and always interpret it in your own way, and that interpretation actually doesn't have to be religious. You can apply sermons to your life, not at all in a religious way.

I'm disappointed that you don't realize that church is also community. Perhaps you do see it as community, but if you truly felt included in the community, you would want to come to church.

I'm disappointed that you don't see church as a way to serve the community, in a non-religious way. Perhaps you do see church as a way to serve the community, but it is not enough to get you to come to church anymore.

I'm disappointed that church doesn't feel like a really supportive place for you, because it is that way for me and I wish everyone would have that sense of church. Did you feel ignored? Did I ignore you? I do feel like there were times when everyone was talking to each other, and you were there, and you felt ignored. I am disappointed that you were ignored, because if you weren't ignored, church is still a place where you would want to be.

I'm disappointed that church isn't close to family for you, that you don't realize that our church family would do pretty much anything for you, that our church family loves you very much. Perhaps you do realize this, but it still isn't enough to get you to come to church. Perhaps we are that family but some people are so annoying to you that you can't stand to be around them. If this is true, then I am sad about it.

I hope you are able to find other ways that create the atmosphere that church creates for me. Perhaps even a different church could create the atmosphere that I have described here, but for you.

Community. Service. Support. Family. Love.

I am disappointed that you do not feel these things at church, or at least not strong enough to come to church anymore.

I am disappointed that all of these things are not as existent in society today as I feel they once were.

I am disappointed that as a member of the church, I feel like I, and the church, somehow failed.

And I hope that somehow there is learning in here, but I'm not seeing it now.

Peace

Saturday, June 29, 2019

Journeys without wheelchairs

Writer's block... I've attempted to write this a bunch and here it is - maybe someday I'll put all of this together in a book and rewrite much of it.

During late spring this year, I faced my fear of flying and we traveled (two separate trips) to New York state to see my cousin get married, and then to my awesome alma mater, Kenyon College, which is somehow always a magical place for me.

Before we left, I had several conversations.  I told my husband that I really couldn't imagine wheeling through the airport when I could walk pretty far, and I hate sitting for any period of time. I told my physical therapist that I wondered if I could do trips without my wheelchair, "Nemo." I told a few other people similar things. No one said that I needed to take my wheelchair and it was suggested that I really wouldn't know if I needed it until I tried. And so for the first time since I have had Nemo, I left him at home and made my way through airports, retreat places, a mall, more airports, the Kenyon campus, hotels, dorms and dorm rooms, restaurants, bathrooms, and more airports - without Nemo. I survived. There were some interesting times. And I am glad Nemo stayed home. Here are some highlights of the trips.

The journeys began at the Denver airport. Our family of three first took an overnight flight to Newark. I hate to fly - it's my biggest fear. Flying overnight worked because I took medicine which calmed me but also made me very tired - so this method works best if I am flying when I should also be sleeping. Walking through airports - it's a lot of walking - the Denver airport is under construction, so there was a lot of walking there. Security - that should be a different blog. But know that no one who has a walker will successfully blow up a plane because people with walkers undergo more security than anyone else.

We made it to Newark without me pushing the flight attendant button to ask if the slight turbulence was normal (what I like to do on airplanes) and without me giving anyone next to me the death grip as we took off. I walked onto the plane, and I walked off the plane, without any assistance, which I could do because I didn't have to use Nemo. And then we had to go to another gate...... a gate that was a long distance from where we were, and my sleep medicine was still working well. I remember walking, and walking, and walking, and being in a complete fog. And then I was told we were where we needed to be, and I fell asleep with my head on my walker, zonk. I didn't wake up until it was time to get on the next plane. Got on that plane, fell asleep, woke up when we landed (lucky flight attendants didn't have to deal with me pushing the button since I was asleep).  More walking! But my medicine had worn off so I was awake.

And to that point, I had walked a lot, much of which I was in a zombie-type state. But Albany - more steps - to the car rental! Then breakfast, and then we were off to the beautiful Catskills! That weekend was great. Really Nemo would have been in the way. Where there were steep hills I took a car.

And then... "Hey, Beth? It seems your walking stick broke." What?! Somehow it broke. I took this as a sign I shouldn't be using them anyway because my knee had been injured and I had been told to cut back on using them. Bart (walker) went everywhere from then on, that weekend. We had a lot of fun. My cousin got married. My daughter sang a song at the wedding. We ate great food. We danced to great music. We attended a book club. We stayed in an awesome cabin. I had no trouble navigating without Nemo. We made it home. Lots of walking. I think we got into the furthest gate from the parking lot in Denver.

Next trip. Kenyon! Another overnight flight. Continued construction at the Denver airport. More observations that people who use walkers will not be able to blow up planes due to high security. Bioness devices do not make it through metal detectors and are tested to make sure they don't have bomb-making stuff on them. Also, with Bart I haven't taken the moving walkways. But I get more exercise by not taking them - I keep telling myself that to make myself feel better... as people on the moving walkways move past me while just standing still.

We took another overnight flight and this time went first to Washington DC, where I took my nap, and then after 3 hours flew to Columbus. I remember the Columbus airport being much smaller! But again, Nemo would have been in the way. We rented a car and drove to Kenyon, registered for the weekend, and figured out where the electric scooter they had for me was. But I never went to pick it up. Since it was alumni weekend I could drive certain places and then walk.

And I did walk. It had been 4 years since I had been to Kenyon, and I parked in the wrong place, so we had to walk further when we first went to rehearsal. Lots of construction was there - I figure I got to see the construction up closer than most people saw it that weekend since I parked right next to it.

We also sang, and sang, and sang more. We stayed in the dorms and I used the dorm showers - that was an adventure. And I visited people - I loved that - my college roommate, my first college advisor, my running coach, my Economics professor, my choir director (good thing I had missed getting a picture with him, so I got to meet with him again and visit for a bit and get a picture), a good friend who also went to Kenyon. I missed my doctor who was in Colorado while I was in Ohio, and then there was a tornado so I didn't get to see my Statistics professor because he had to help his son whose house got hit. We drove on all of the old running routes I used to take. It was beautiful. We got out of the car. We took pictures. I have great memories of those routes.

While visiting with my Economics professor, I talked about the time I had spent, while in college, going to medical appointments. And I realized that I had never been back to the place of all those appointments. So we had a bit of extra time and we drove to the Ohio State University medical area. And then I had to find the Wendy's where I used to park when going to appointments because I refused to pay to park at the medical center. It took a while to find it, but the Wendy's is still there. I have memories of walking to and from that Wendy's, the last time being when I was diagnosed, and the walk back to Wendy's feeling like a dreaded finalization of what had been happening for years. Driving through this area was emotional - feelings surfaced that hadn't for years - of how many times I had to go and have tests which brought no answers - feeling at some points that many did not believe me while knowing that my best friends, my family, my Kenyon doctor, and my running coaches knew something was wrong. I am very glad I went back. I won't go back again. I learned that the neurologist who diagnosed me, and who I liked, has retired. It has been a very long time.

And then, one more plane trip. One more dose of medicine to calm me and make me tired. Since the last flight was a direct flight, my mom picked us up and drove us home. In the air, I looked at my daughter next to me. She fell asleep and looked so peaceful while I took sleep medicine and was fairly wide awake due to turbulence. I wish I could fly like she does!

Arrival: Denver! And........... farthest gate! I turned on my Bioness. Beep beep beep! Red light. The Bioness on the right side wasn't working. My right side is weaker by a lot and it didn't get any help. My daughter had a rehearsal and she wanted to get there so she wanted me to hurry, and all I could do was drag my right leg along, getting slower, and slower, and slower... "M'aam, would you like a ride?" A nice person asked me that. I tried to politely say no thank you. See, this is my battle and I'm not taking help. We made it to my mom's car and I was exhausted because of dragging my right leg.

Finished! No Nemo! I made it! I learned that airports involve a lot of walking and I will walk more than others since I can't do the moving walkways. I learned that I will have challenges everywhere along the way, and that most of these challenges are not visible to others. I also learned that these challenges used to be impossibilities. In the past I haven't been able to get on and off a plane by myself. I haven't been able to stand for extended periods of time. I haven't been able to use a regular toilet without needing bars to grab. I haven't been able to curl my hair while standing. I haven't been able to do as much as I do now. These trips showed me how far I have come and they showed me that I didn't need to bring Nemo. So I'll keep pushing forward and exploring new possibilities that I never really thought would be possible. Never say never.... "suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us." Something like that.

Peace.

Monday, April 15, 2019

MS Walk - 2019

This is what I wrote in an email to the list of friends and family of mine who support me in the MS Walk every year.

It's that time of year again - May 4 is Denver's MS Walk in City Park. Last year I wanted to just walk the whole thing, and I did, without stopping. This year my goal is to walk the mile in under 30 minutes. You should know that this is a pretty big goal. I'm also stubborn and if I don't make it, I will find other places to walk a mile in under 30 minutes.

Before I tell about my year and why you should continue to support me, here is the link where you can donate to support me in the MS Walk.  Money raised goes to research toward a cure for MS as well as for programs for people with MS, their families, and friends.  Here's the link (and every donation is helpful - big, small, somewhere in between):
https://secure.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=30400

There's a thank you video on that page - check out the end of it!

This year has been another breakthrough year for me which is strange because I thought last year was the last of those. But I'm not complaining. People now ask me what I did to my knees. It's nice to have people think that bad knees are my only problem.

This year I went from using my walker to using hiking sticks to walk. Making this transition is the hardest thing I have ever done. It is all about my core muscles (stomach and back) working, and trusting that I have the balance needed to use something a lot less stable than my walker. At first, it took all of my concentration, and I still don't look around much when I use them, but I have just started to be able to go up and down curbs using just the sticks.  I can walk about 30 minutes with them, at a much slower pace than I walk with my walker. It is difficult because it is less stable, especially initially. And at a certain point my core muscles are done and I may not be back to my car - it's a bit problematic.  It feels like being placed in the middle of a swimming pool, far from the edge, and then not knowing if I can swim at all, but I'm stuck in the middle of the water, in a pool where there are no lifeguards or anyone who knows how perilous it is that I am in the middle with no options other than to somehow keep going, so people just wave and say hello as I have a bit of an internal panic attack.  But I have made it back to the edge of the pool, in this analogy, many times. It hasn't been pretty but I am continuing to improve. Step. by. step.

This is possible, still, because of the combination of Ampyra, which I have been on for 9 years now, physical therapy, being stubborn, and the support of all of my fantastic family and friends. This year a generic version of it became available which makes it a lot less expensive for whoever is paying for it (I pay a copay every month). I can now stand for any length of time without getting tired.  Last year before the MS walk I walked a lap around the track in 9 minutes and 30 seconds.  This year I walked that same lap in just under 8 minutes, gasping for air when I was done.  It felt much like how I used to feel at the end of an all-out 400 or 800 meter run. I absolutely love that feeling - there is nothing like it.

I still use a treadmill that holds 25% of my weight, twice a week and have walked 16 minutes at 3.3mph on it. I don't know that I can go much faster unless I can figure out how to bend my knees when I walk - and I don't know how I can learn that, but I didn't think I would ever use hiking sticks so you just never know what is going to happen.

The Bioness devices I use to help me walk came out with a new model! The new model is exciting because it doesn't require a heel sensor but works by determining when I am starting to lift my knee when starting a step.  And it is controlled right on the device so I no longer have 2 remotes that hang around my neck.

I stood up to ski again this year and one by one they removed a bunch of things that helped me remain standing while skiing with what they call ski legs. By the end of the season it was just the ski legs, my instructor, and me standing to ski.

There are also many little things. I can walk around my house without using anything to walk - around 50 steps. We do joke about me looking like a walking zombie - imagine a person walking with knees that do not bend.

It's an every day thing. I'm not going to give up and I'm hopeful that small improvements will continue. I hope others know the same thing - that no matter what is happening in their life, they should not give up, and no one should assume that they can't improve, because you just never know.  Pep talk complete?

What would be amazing is if you, the people who are reading this, could find a way to donate, as so many of you have done for years - to sponsor me in the MS Walk, no matter if it is $1 or some huge amount of money - so that someday we can say there is no more MS - so we don’t have to look for  improvements - but so that we can say people do not have to even be diagnosed with this disease. That is my great hope.

Thank you for all you have done in the past in terms of sponsoring me. Words cannot express how grateful I am.

Much love and peace to all.