The "rules" according to Beth

The most common question I get when doing any training on disability awareness is how/when/where it's appropriate to ask someone if they would like help. I actually don't think I've done a training where this hasn't been asked. Friends ask me too. So, apparently everyone is unsure. And people with disabilities, or at least me, are not good about asking for help because then we're afraid we'd be perceived as weak (see a previous post on this).

The hard part is that there is no "right" answer because everyone is different. But here's what I think.

Anyone can always ask me if I would like help, just like anyone can ask anyone else if they would like help for whatever reason. My mom and I have frequently discussed HOW to ask. I think if a person says, "Would you like any help?" then that's fine. And after that is when things get tricky.

If the person says "no," then generally they want to continue and not be asked, "are you sure?" and other follow-up questions. For me, that's because, if I'm putting my wheelchair together and say "no thank you," then additional questions are throwing off my routine and creating frustration.

I think I understand why people ask follow-up "are you sure?" questions. My mom was born and raised in Minnesota. If you go to her house for dinner and she asks you if you would like seconds, "no" just doesn't do it. The thing to do is for her to ask "are you sure?" and then if you say "no" she may give you alternatives, or tell you what's for dessert! So follow-ups to "no" are common for many things, but it doesn't work, generally, in the world of people assembling wheelchairs and doing other adaptive things.

Then if someone does say "yes" to helping, it gets tricky again. People want to help (my mom will bring you all the food you want!). But the person who wants help generally knows what that help is. So, they want help, but if possible, let them direct you. My wheelchair has to go in my car so that I can get it out again. If people grab things without asking, well, first I could be leaning on the part, lose my balance, and hit the ground. But if a person lets me tell them what to do, things will go better. It does sound selfish, but disability is tricky - well-intentioned help can go wrong and no one wants that.

Today I went to Target. A woman was next to me in the store and said "you should try one of those power cart things." She somewhat laughed, but it was that "I'm really uncomfortable and don't know what to say" laugh. That has nothing to do with helping, but fast forward to when I was leaving. The parking lot was snowy - slip and slide. As I was getting my trunk open, 2 guys asked me if they could help. I've decided that's ok in snow and ice - I give up being stubborn and my shoulder thanks me because in the snow, I'd be using it more to help with balance. I said, "sure." And it was perfect. They just stood there, and I said "Could you..." and it was somewhat of a team effort. It was awesome.

I said everyone is different. A friend of mine wants people to wait a bit to see if she is struggling before asking her if she needs help. Another friend says only offer to help if you feel comfortable asking. I say the follow-up "are you sure?" questions are really hard. So I can give my opinion, but like everything else, we are all different.

Today, I wasn't even up yet, so I wasn't struggling, but I knew I would. I used to hesitate accepting help more before I yanked my shoulder, so I have learned, and there are still times I should accept help when I don't.

I struggle with ending this post because so much could be said about the woman in the store and other things that aren't quite related. So I will end it here, with the example of what happened today, where 2 people asked nicely if I needed help and it all worked. And then we all wished each other a happy new year. Ask all you want (once per "activity"). You don't know when someone will say no or yes, but respect it. If someone snaps "NO!" there may be a reason. But please keep asking. I wish I were the one who could ask. But since I'm not, thank you to all the people who ask, anytime you ask, whether I say yes or no. And thanks to those who help.

And with all that said, as the 2 guys said, happy new year. Let's all help each other however we can.

Peace.

Resolutions

I used to make the new year's resolutions, but they were always so impossible, so I stopped. Now I'm thinking, instead of impossible things that are checklist types of things, what about concepts? But the first one is a checklist thing - and it somehow seems impossible. But here they are - have to document them somewhere...

1) Finish my Masters degree.

2) Find more time to pray and let God in.

3) Keep trying to be as strong as I can be, physically.

That's it. It seems so simple, but it's plenty.

Peace.

Nothing is the same

Today I showed up at physical therapy. My therapist took one look at me and asked "are you tired?" It WAS 5:30, but...

Backtrack 3 days...

"Please God, don't let this happen to me again. I can't go through this again. I don't think I can do it." Tears.

Backtrack about a week. "Hi Beth. We're switching your medicine. You see, the drug company's patent is about to expire, so they have created basically a new version of what you have. We're switching everyone to that until the generic becomes available, and then we can switch you back."

Well, if it's the same thing, then I guess it's fine. This medicine helps with fatigue. Without it, I am super tired. Once I went off this medicine for a few days. And then, Beth went away and was replaced by someone who was extremely depressed. It took months for Beth to fully return.

Nothing is the same. Everything, to some degree, is different.

The dosing for the new medicine is different. This past weekend I started the new medicine. And it's not the same, because, nothing is the same.

Today I was told to increase the dose.

I hope that works.

I haven't felt the same. I've felt tired. Beth is still here, but it's a somewhat subdued Beth. Somewhat subdued Beth isn't really Beth. This Beth likes to just sit and look at the walls. But it IS still Beth, because this post is being written, as opposed to me being off in a corner, crying.

I know God can't change this, and that God is with me through this. And everything will be ok.

And yet, I think I'll still ask God tonight for taking the whole pill to work.

I guess I'm being difficult again (see earlier post). But, as per earlier post, define difficult. People need to listen and respond, rather than pass something along to someone else. This will all work out. There will be fewer tears. I'll be happy soon.

And God will be right here with me along the way.

Peace.

Favorite Carols, resolving, and not (resolving)

Two part blog...


Part 1:

It's always been clear to me what my favorite carol is... Once in Royal David's City, and I've been contemplating why this is. Here's the first verse (part of it is that I like the lyrics):

Once in royal David's city
stood a lowly cattle shed
where a mother laid her baby
in a manger for his bed.
Mary was that mother mild.
Jesus Christ her little child.

A carol can be defined as a joyful religious song celebrating the birth of Jesus Christ. Now if you don't know this carol, you'll have to trust what I'm saying. My favorite parts of this carol, and why I like it, is how it resolves (defined as "settles") at different points. It resolves in pitch, in the first line, from "in" to "royal," and in the second line from "a" to "lowly." It's a musical thing - when I break it down, I might wonder where this song is going and then it resolves from the second to the third syllable in each line. And in a sense, as we move from Advent to Christmas, we have resolution, or settling. We have been waiting, and Christ is born. And it's truly beautiful.


Part 2:

I thought everyone had a favorite carol, so I started taking a survey and I've been wrong - many people like many carols, for whatever reason. When I look at most carols, they resolve. And this led me to this strange thought that in life, or in death, there is not always resolution.

Perhaps this thought is because of the unexpected, sudden passing of my aunt. I was wondering if she had a favorite hymn but she couldn't be a part of my poll. So much of her passing is this feeling of things not being resolved - she did "go out on top," but ??? As our family went through Christmas, things were a bit odd. I wouldn't normally think "what was Aunt Dot's favorite hymn?" as I considered mine. I wouldn't have strange thoughts like that I'll never receive her Christmas card, although they were probably done. I probably wouldn't bring her into as many thoughts as I have had. And because of the unexpected nature of the whole thing, my thoughts wouldn't be so much of the kind of "what if?" or "I wonder." Christmas seems to "resolve" so much and I've been in this strange sense of inconclusiveness.

Part 1 resolves and part 2 has not, although over time it will. Perhaps in a strange way, the words seem to lack of resolution the following carol. Resolution seems questioned.

I wonder as I wander out under the sky,
How Jesus the Savior did come for to die.
For poor on'ry people like you and like I...
I wonder as I wander out under the sky.

I'm also wondering, as I wander a bit.

The doggy in the window

In Advent I always think how I should "pause" and reflect more, just take that time. I'm doing that - it's for a somewhat different reason.

She went out on top - my aunt. She loved life and was busy all the time, loving everything she did, always thinking of others. She'd always tell me she loved my Christmas letter, and couldn't wait to get it each year. But what wasn't supposed to happen did happen, and although her parents made it to 97 and 99, she ended her baptismal journey suddenly, without any warning, at 73. I wish I wasn't so late with the Christmas letter this year.

I struggle with not understanding this at all - why so suddenly? I don't get it? Why at the top of her game? Perhaps that is best in this case - we can cherish the memories, too many to name, but here are a few...

Memories
* Lori as a baby, and my aunt singing "how much is that doggy in the window?" to rock her to sleep. I'll never forget that.

*The gift of tickets to Lorie Line in Minnesota for my birthday - and now I continue going to Lorie Line concerts. My last email to her was the picture of my Lori sitting next to Lorie Line onstage.

* Minnesota - when I lived there she was 2 hours away, but she checked on little Beth, just out of college. "Bethieeeeeeeeeee, this is your Auntie Dot." OK, really, she could have stopped at Bethieeeeee. No one else said my name the same way and never will.

* Fall leaf trips in Minnesota. She would pick me up when I lived there and we would spend the day looking at the beautiful changing colors on the Mississippi. And she would say "Ohhhhhhhhhhhh...." with the Minnesotan accent to the max, so you may only understand "Ohhhhhhh..." if you've heard the accent.

* "Beth, I was on that medicine and you are like me. You need to stop taking it." She was right. We were similar.

* "Beth, you should become a member of this church. You keep coming back here." Right again.

* Random articles in the mail that she would send for me on MS.

* Memories with cousins and my mom, her sister. Get the sisters from Minnesota together with "Ohhhhhhhh..." and it can be quite comical.

So, memories. There are sad times. There are tears. This was unexpected. And so, during Advent, I pause with sadness but also memories.

Peace.

"Difficult"

We were discussing service and maybe how to incorporate a "difficult" patient into this. I said I thought we wanted to be careful with the word "difficult." Well... someone who chats a lot was given as an example. So I continued to think. This will end up as me telling my story to the few people who read my blog.

Difficult... interesting... from whose perspective. If I am difficult have you considered why - have you flipped the coin? I'm as much to blame for this - I may consider someone difficult.

Anyway, my story as the difficult patient...

This woman just had shoulder surgery. She has MS. We can't move her because her legs are out of control. She's difficult. I guess we can put a moveable toilet by her bed. Maybe then she won't be as difficult to move.

I'm in the hospital after shoulder surgery. Hasn't anyone been trained in how to move someone who doesn't have good use of their legs? Isn't there a procedure for moving people like me? Something is wrong, yes, but I've been knocked out and I don't get it.

Physical therapists arrive. Difficult patient can't stand. Her legs just shake. She has MS - the best place for her is a nursing home. She won't do that. Come on - she has MS - doesn't she "get it?"

Oh, I'm coming out of this now. I don't think I've received any of my normal medicines and so my legs are shaking. Where is a doctor? These people who don't know me and gave me 2 minutes want me in a nursing home due to MS. No way - something else is happening.

(that night) This woman wants medicine but it's not what her prescription says so she can't have it. Won't she just go to sleep? Why won't she just use a bedpan? She is difficult.

Oh, I'm getting it. I haven't been standing so nothing is working and I don't think I've been getting my meds. Why won't they give them to me? My legs are spasming. I can't sleep without my meds.

(next day - difficult patient is transferred) OK, we have a new lady here and she is difficult. She doesn't want to be here. She wants medicine and we can't give it - it's not what her prescription says. It's 1am - can't she go to sleep?

This is going to be a long night. I haven't had meds. They gave me 2 out of 10. The doctor said they could give me 2 more. Woo hoo - we are now at 4 out of 10. Look at my leg - if it were long enough, it would jump to the ceiling. I am in hell, clearly. There is no escape.

(2 days later) What?!! The difficult patient escaped, came back, and no one noticed! She must be telling a lie - she really thought she could leave? Now she wants to go home? We're going to have a meeting to discuss her!

OK, I've had it - I'm going home. I can do what I need to do. I know this because I left and found out I'm able to do things. I didn't know I shouldn't leave. I am out of here - then no one can tell me which rules I'm unknowingly breaking and I can take my meds as I know how to take them, and I can work things out.

The end.

Clearly the difficult patient wrote this. There are other "sides." But has anyone asked what she thinks? No, not until the end. Who learned what from this?

Define difficult.

Do you see what I see?

A familiar tune went through my mind last week... at the school bookfair...


"Do you see what I see?"
I see stares from children
What do they see?
They see, I think, that I am different.
I want them to talk to me before their parents snatch them away.
I want them to see it's ok,
the wheelchair... or the walker... or whatever...

"Do you hear what I hear?"
I hear whispers. I hear "don't stare."
What do they hear?
They hear, I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to hear it's ok,
the wheelchair... or the walker... or whatever...

"Do you know what I know?"
I know I'm at the bookfair, just like them.
What do they know?
They "know," I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to know it's ok, it's good,
the wheelchair... or the walker... or whatever...

Because you/I see... hear.. know...

"Said the king to the people ev'rywhere:
Listen to what I say!
Pray for peace, people ev'rywhere,
Listen to what I say!
The Child, the Child
Sleeping in the night.
He will bring us goodness and light.
He will bring us goodness and light."

And all the other stuff is, really, minor.
We are all children of God.

Peace.

One

One final finished.

One class finished.

One more Spring class.

One more Summer class.

One Capstone Project.

One Masters degree within reach.

One person says "You know Beth, not everyone even gets a Masters degree." True. But in my family, everyone gets more. But my One would be the impossible dream.

One God, or three in One.

One Advent.

One Savior.

It seems so simple, yet is so complex.

One.

So far, yet so close.

Peace.

The boiling point

Someone once gave a talk on why people may appear to "snap" and the person who is the recipient of the "snap' may blame it solely on ethnicity, race, disability, etc - really, any stereotype - put the blame there. I thought, yes, but why?

Think of a pot of water set on the stove to boil. It gets hotter and hotter and little bubbles start and then "Snap!" You have the full boil. So for me, say, with a disability, it's not one frustration that makes me snap. It's a whole series of little things that continue to add until I can't take it, and unfortunately, someone may receive a big dose of how I feel.

It was my birthday on Friday, which I actually celebrated by skiing the previous day and will celebrate tonight by going to a concert. But the birthday started with me running a bit late for work. And the series of little things happened. I forgot my medicine, but that's ok because I could go and work from home in the afternoon. I took my main walking medicine, which sometimes makes me feel like not eating, and I felt really awful that day - no food for me.

I got to work and all but 1 of the 20 accessible spots were taken. At least there was one, so I got out and started to take my wheelchair apart. A (nice) car zoomed in next to me - into the area of those lines put between accessible spots. A lady quickly got out of her car, in high heels, came back, and said happily, "Can I help you?" No, but thanks for asking. "I'm going inside for just a minute and I'm in not hurry, so it's no problem." (happy voice) She doesn't have a tag on her car, there is other parking, she's not in a hurry, so I nicely say, "you know, we really don't like when people park on those lines." She was receptive - the happy lady moved her car and I could open my door to get my bags. But the water was getting a bit hotter.

After lunch I headed home but my car needed gas. I decided to be "helpable." I mean, gas stations have all these signs that they will help people who have trouble or cannot pump gas, and the last time I tried to pump gas, I decided I could probably hurt myself. Gas station #1 said beep 2 times. That did nothing, but the phone # was on the door so I called. "No, sorry, can't help you." Gas stations 2 and 3 - well, I'll just say no one was paying attention and there was no phone # listed. Gas station #4 - signaled the guy inside - he wanted to help, even though he was the only one working. He found a way to get it done - now I'm further from home because I know if I go further north, I'm more likely to get help.

I drive home, big construction me slows down. I have a meeting on the phone at 2 that I think I may miss - didn't plan on 4 gas stations, but I plan the sequence... get inside, get medicine, find phone, computer, etc. I make the call.

Next: get Lori to piano and dance - little frustrations. The pot boils over but at least I recognize it and just don't talk. Lori wants to know why I'm not talking. I can't explain it's because I'm done.

I get dinner and bring it into her dance dress rehearsal. There's salad and carrot raisin salad, but no fork. And I'm finally hungry after eating almost nothing all day. I can't take this anymore so who knew salad and carrot raisin salad could be eaten with fingers?

Note that throughout this day God is taking quite a beating - it's amazing that there is forgiveness, because I'm saying "God, you have GOT to be kidding me!" And then throughout the gas thing, I'm almost in tears asking God why this is so hard and why no one is helping and why no one cares. It's not true that no one cares, but it sure feels like it. And God, really, could you give me a break somewhere here? I have just had it.

The break comes when Lori comes out of dance. "Happy birthday, Mommy!" We go home. She has been working on a "book" about people with disabilities. It's very sensitive. From her vantage point, she communicates so many of my feelings.

"Mommy, what can I be when I grow up?"

"I don't know, but I hope you can use your creativity, the love you have for music, and your happiness. I think you can do something great."

She really can - I think she turned off the stove so the water stopped boiling.

Peace.

Drop it at the door

I thought of titling this "Hitting the slopes," as it's about my first day back skiing (pre-bday celebration, because today, my bday, was packed with other stuff). But then I thought it's not really about skiing. I'll explain.

As I awoke that morning, I thought did I really want to do this? I was comfortable in bed at 5am. But I got up, and out I went. Up the mountain I drove and as I exited the Eisenhower tunnel (gateway to the mountains for me), the beauty of the mountains was stunning. Clouds of pink slightly covered mountains. Yes, this was going to be worth it.

Perhaps the best moment of the day was entering the office in Breckenridge, the BOEC office - where people who go to do adaptive skiing. And it seemed almost everyone was there that day. All my friends - go through those doors and leave disability somewhere else. The BOEC is where to go to realize abilities. It's where to go to get infectious positive vibes. Smile - everyone else is. How are you How was your summer? Everyone is equal - disability or not. It is hard to explain - these are some of my favorite people. So the day was not mostly about skiing - it was about people. I wasn't expecting that.

My instructor, Charlie, he's one who found me when I struggled to see what this former athlete was to do with MS. Charlie gave me a ski lesson years ago. Then I had Lori and a few years later, returned to ski and was put with Charlie again. Charlie got me skiing, got the athlete back, suggested I get into handcycling. It's all about the people. For this, I am grateful.

The skiing itself yesterday was not impressive. I started ok, but mid-morning I was back to an old habit which only serves to hurt my shoulder. By lunchtime I was discouraged. Back to the office where the focus was positive. But I was discouraged. Enter Michael. He gave me a ski lesson last year. What he sees in me is different. What he clearly sees is this person who, no matter what, will beat herself up. Nothing is ever good enough. He told me I need to focus on being positive about myself, rather than just beating myself up. He said, "You should get up every day and think something positive about yourself." He's right. The infectious positive attitude is everywhere in that office and he has it too, but I'll fight it.

Back in the afternoon, things were ok - not great, but ok. And it is the first day of ski season, so not everything can be perfect. On the last run I was getting out of control. I was trying to crash because things were so out of control. I was headed to the right but couldn't stop and couldn't crash. And all at once, I heard, "Beth! Look downhill!" In a split second I did just that. Snow flew in my face. I turned left and came to a stop. Whew - that was a close call. I did it! Apparently it looked cool, like I knew what I was doing - carving the slopes fast, in control. The beauty of out of control, but it was corrected in an instant.

And so I will go back. I'll try to improve at skiing. I'll try to find some positive thoughts. Mainly, the friendship and sense of community is key. Drop it at the door. Smile. Everything is possible.

Peace.

A look back, a look ahead: Advent

It's been 3 years since...
- medication "oops"
- resulting severe depression
- pulled out by church, somehow by Advent

The memories of depression slowly fade, though I'll never forget the pain. And each year the memories strangely return on a day like today.

And so we're at Advent again. We're waiting, anticipating, hoping.

And today, I'm...
- stressed, but ok
- uncertain, but holding onto faith that things will be ok
- weak physically, but then again, much stronger

And the hope that brought me back 3 years ago remains today in a different way,

because as I wait, anticipate, and hope,

occasionally I feel

Peace.