Not quite like that...

This week I met with the 2 other Co-Chairs of the people with disabilities association we have where I work. I forget how much fun we always have, and that laughter always seems to bring us to tears, because we can relate to each other. One person has a spinal cord injury (SCI), call her Jane, and the other has mostly invisible MS, call her Donna.

We laugh at silly things we have done, circumstances we "overcame," and choices we have made. Donna and I laugh having both experienced severe depression from steroids, and deciding to live because a kid needed to be picked up or a dog needed to be fed.

We all laugh at the choice as to whether to go back and retrieve something from the house, if we've forgotten something and are already in the car. How important are those things we forget? We generally leave them behind. We're exhausted. For me it may be that just getting ready and making it to the car involved falling multiple times, or zapped all of my energy.

Similarities are amazing - we all deal with different beasts. Jane and I frequently deal with exhaustion. By the time we get to our car, we collapse and are thankful for the drive ahead. Donna is told by people "but you walk fine," but she deals with exhaustion and pain. Different worlds which are, amazingly, the same.

Jane shared an article with us from someone who uses an electric chair. He fell out one night and couldn't get back in the chair; for him, the act of crawling to reach his phone was like climbing Mt. Everest. "There are times when it is all just too much. One moment you are independent, the next you are on the floor, stuck, helpless as a baby. Dignity, self esteem, all that evaporates. There you are, out in the world, competing with the able-bodied, kicking ass, and then of an instant, you are a pathetic cripple."

This morning I went to an appointment. I arrived at the parking lot which had been plowed, but was still icy. The accessible spots seemed worse. I chose what seemed to be the best spot. I got out of my car to get my wheelchair and as I got to the back, hit black ice and landed on the pavement. I heard people but strangely, no one noticed or asked if I needed help. My Mt Everest moment came. I opened the trunk from my position on the black ice, pulled wheelchair parts to the ground, somehow put the wheelchair together, and pulled myself from the black ice onto wheelchair. Alone. But I conquered it. My Mt Everest moment, not witnessed by more than 4 people who didn't see, or chose to think someone putting together a wheelchair while sprawled on black ice was somehow "normal."

I'm a bit stuck. My Mt. Everest moment ironically happened at an appt to get a second opinion about my hurt shoulder, and climbing the mountain irritated my shoulder more. But I'm more stuck on where are people? Was I invisible? I hate being the person in the wheelchair who needs help. I wish I could be the person who notices the people who need help. I hope I would notice and help. But would I?

And where's the religion here? Well, I didn't think at all about God during the wheelchair incident. I thought about what I needed to do, one step at a time - open the trunk... ok... - get the main wheelchair part out, reach for the wheel, one wheel in, balance the chair, get the other wheel, balance chair and wheel ... pull self off ice onto chair, etc. Go to appointment and smile. But I think God was there, and God is there to help us build relationships where we can laugh and each experience our own Mt. Everest moments, no matter what those may be. Thanks be to God for that. And thanks for those out there who do help. And lastly God, while I'm at this, could you reverse my shoulder to where it was prior to this Mt. Everest climb?

Grandma

February – the mixed month. I was diagnosed with MS, Lori was born, my cat was born and then died, and today was my Grandma’s birthday.

She was much older than most – they had kids late and my parents had kids late. We only saw my mom's parents once a year; my dad’s parents died before I knew them (but my Dad’s dad baptized me); and I didn’t really know my grandma until I was an adult and moved to Minnesota after college. So I remember her when she was in her 90s. But she, I am told, had not changed - she had a cute laugh, worried, and used being stubborn to her best advantage.

Perhaps the funniest memories of our relationship were during that time. I came one night and a mouse showed up. While I sat in the chair and squealed, my grandma chased the mouse around the living room, broom in hand, using her walker (I was still running at the time). Later she would inform my mom that somehow the mouse had come in my car. Good times! I would go on long runs from her house, come back, have a glass of water, and have her tell me I should consider getting checked for diabetes due to water consumption. This was after she stated her relief that I had not been kidnapped, and told me I need a better breakfast before going running. Good times!

I ran from her green house out to where their farm used to be. The Twin Cities had expanded so much that their farm was bought and a healthclub was built on it. They retired on part of the land, which turned into a parking lot. But there was still tiny "Holasek Park" (Holasek was their last name) and I could stand there and envision their pink house in the distance, where we would play using their wagon to find the steepest route down the nearby hill. Great times!

After my grandpa died (he had been in the nursing home for some time), my grandma moved to Colorado to be near my mom (after 90+ years in Minasoooota). Apparently everyone wants to be near my mom, the caregiver, because I moved back shortly after that, taking with me the geranium my grandma had given me, which amazingly enough, is still alive. I guess I got her green thumb!

My grandma once told me I should just ask Dave to marry me rather than wait for him to ask me! Clearly she was ahead of her time.

She almost made 100, but 99 is pretty amazing. My mom went to visit her for the last time (unknowingly), held her hand, kissed her, and left. By the time my mom got home, the nursing home had called to say Grandma had left this world; it seems as though she waited for my mom to leave, not wanting to bother anyone. And that was who she was. Around that same time, I got pregnant with Lori, and Lori was born 3 days shy of when my grandma would have turned 100. The timing is amazing – I still think my grandma's spirit looked and continues to look, from heaven and smiles at the miracle of Lori.

So happy birthday Grandma, and thanks for the great memories. Perhaps I will someday chase a mouse with my walker and a broom.

Lovely Lori

February 20 is my daughter, Lori's, birthday. It's hard to believe she is 7. I always wanted to have a daughter, and 7 years ago, the dream came true.

Almost 8 years ago, I decided I couldn't get pregnant. Immediately after that decision, I discovered I was pregnant. I knew that not only would the pregnancy be difficult, but so would the reactions of people. So I waited as long as possible to tell people. My husband knew right away and I'll never forget the cute little grin and hug he gave me.

One doctor told me I needed to go off all medications for 6 months before attempting to get pregnant. I chose to research my medications, and take an educated risk. By the time I told this doctor I was pregnant, I was more than halfway there.

I remember spending most of my pregnancy being really scared. I was scared to tell my rehab doc. To him, I blurted it out. Typical of him, he paused, removed his glasses, looked me in the eyes, and said a heartfelt "Congratulations." He would be the one who would follow me for the remainder of the pregnancy, to make sure I was ok physically.

I was afraid to tell family and friends, although most were supportive. I was most afraid to tell my dad, and heard through others that he was not happy.

But the miracle of Lori occurred. Doctors thought I would need a c-section but I didn't. I ignored typical advice to go back on MS medications after delivery, and I did fine.

And I have this dream child. Of course on her last night of being 6, she had the attitude of a 13 year at some points, the emotions of a 3 year old at other points, and the very sweet little girl about to turn 7, who is my favorite.

Thanks be to God for the miracle of Lori.

And as a sidenote which should have its own entry, thanks for the miracle of Robert's successful surgery.

Pain and Trust

I've been debating what to write here, with so many thoughts mulling through my head... here goes...

Today my friend "Leo," who is really Robert (it's a Facebook thing), is undergoing a 20 hour back surgery of all back surgeries. Assuming that goes ok, he will then have probably 5 days of the most excruciating pain one can imagine. He tells me that even with all the pain medications that leave a person semi-conscious, the pain will still be excruciating. Without the surgery, he will die. Without his current antibiotics, he will die. He tells me this so bluntly. He needs everything to go right. He needs to defeat some odds.

I visited Robert this past Monday. It's hard - "he looks so good" - how can things be like this? I'd prefer we were meeting to handcycle. I love the memory of our last handcycle ride this fall - so beautiful. I thought it was the first of many rides and he was making a comeback, not that it would be his last. But it was great to see him on Monday. He asked me "So, if you were to be in the worst pain of your life for 5 or so days, how would your faith help you with that?" My answer: "I don't know."

I don't know many things - from where my faith came (there was no real defining time), why I have it and others like Robert don't, how it would help me through various situations - I just don't know.

So I thought about the previous week and told him about that. MS can cause my legs to ache, and sometimes it is very painful, though nothing like what Robert has and will experience. Last week my legs ached badly. One night I propped myself up on the bathroom sink for 30 minutes(standing position - putting the pressure on them helps a bit) and that helped. The next night they still ached badly. I tried to stretch in bed. They just hurt. The pain was not easing. On my nightstand I have a little saying which includes "when in pain, trust God." So I was trying to use that. But I hurt, badly. So, to be honest, I cried and said out loud that God, I am putting my trust in you, that you will help me with this pain, but I am not sure how, because it really hurts, and with MS, one never knows whether something like this will get better.

So I told Robert that maybe, somehow, thinking that his pain from surgery was temporary, would that help? Although he cannot find faith, can it help him to know that others are praying for him? We are praying that his surgery is successful, that his pain may not last too long, that he has a successful recovery and is able to find happiness in life, and much more.

This is it, he has said. His last surgery. He is not going through this again. For me, knowing this is hard. I want him to get better. May God be with him. May God give him strength and take away his pain even without his faith, but with the faith of others. May our trust in God help Robert with his pain. Thanks be to God.

Defining "advanced"

In the most recent issue of the National MS Society magazine, there was a call for readers to rename a portion of the magazine that is currently called "Advanced MS." I noted that this section is always geared around people who use wheelchairs or scooters. But does that define advanced? How does one define that?

I use a wheelchair - people assume I have secondary progressive MS, but no, I get attacks and each one makes my legs a bit worse. But my mind still works and my eyes still work, which is not always the case for people with MS. So I still work, and I don't just work for a paycheck - I am constantly searching for work where I am passionate. Many people with MS don't work - does that mean their MS is "advanced?" Maybe not... maybe it just affects their life differently. Clearly, advanced doesn't seem right. Maybe advanced is how we look at things.

We were in church considering the difference between humble and miserable. The difference, I thought, was that someone who is humble is gracious. Someone who is miserable can't get to gracious - they are stuck. Maybe this is similar in some way. Maybe advanced MS can be a state of mind.

I'm thinking that I have been humble, and I have been really miserable, and someone pulls me out of the miserable, I think, more toward the humble (of course, I know I can be more humble - definitely room for growth there!). I hope that somehow that happens with the concept toward advanced MS. I hope, no matter what my physical condition and what others say, that in my mind my MS is never "advanced." Smiling...

February 11

It comes every year. You would think its significance would diminish with time. But it doesn't. 17 years ago on Feb 11, after 3 years of not knowing, of wondering if this was all in my head, it came. "You have multiple sclerosis." So it has been 20 years.

The year I was diagnosed is mostly a dark blur that others recall. I lived in a dark room of a dorm, on the third floor, with my roommate Jenny, in Ohio, so far away from my parents in Colorado. I remember the college party-types down the hall who had no idea how often I was going for tests or how exhausted and alone I felt. I remember losing my balance and falling during Christmas break, hitting my head and getting stitches. I remember taking my first Economics class and that being the highlight of the year. I remember asking our pastor for help shortly after my diagnosis. I remember praying with him and the church secretary. I remember that being the first time I really felt God. It was strong... I felt held.

I remember going home early for spring break, telling a professor it was due to health problems, and him saying happily, "Well then, it will get better." I remember feeling like a knife just jabbed me in the stomach.

I remember going home for spring break and sitting by a stream. I remember the water flowing, and watching the water. It continued to flow, slowing changing course at times, but never stopping. And I remember deciding that is how I wanted to live my life.

I remember the Easter after being diagnosed, that I was able to run again. I ran down a hill in the crisp morning air and felt the freshness of Spring all around me. A woman drove past in her car, rolled down her window, and with great enthusiasm, yelled "Happy Easter!"

So, 20 years later, I live. It is better to know something is wrong than to think you're making it up. I always wanted to be a mom, and I got to be a mom. That is an incredible gift. I wanted to run as long as I could, and I did. I wanted to find alternatives for things I could no longer do, and I have. I wanted to continue to be me. And I am still me. I'm a wife, a mom, an athlete, someone who loves music, someone who won't quit, and someone who believes that God has been with me this whole time, good and bad.

Against the Odds

There are times in life when the absolutely impossible somehow, inexplicably, becomes possible. Saturday was one of those days.

My daughter, Lori, and I were in the mountains for a few days of skiing. I didn't make goals this year for skiing because I have some shoulder problems that seemed to make any progress impossible. The first shoulder rehab exercises seemed to make my shoulder worse. I stopped lifting all weights. I got a "preventive" MRI which resulted in a diagnosis of a (probable?) rotator cuff tear (small), bursitis, tendonitis, and a tiny bit of arthritis. Then add stomach flu the week prior to skiing, and not being able to eat much for over a week. Then laryngitis and a cold behind it. These are not good odds for success!

Yet, there we were, ready to ski. The morning of skiing was horrible--nothing felt right and nothing seemed to be going right. So, to my instructor/friends/coach Charlie, I had the idea to go up to something harder and be tethered (ropes attached from behind my ski to control speed or bad turns). But at the top, Charlie said, "you're going to have to do the first part off tether." What?!! By myself?!! Bad shoulder, weak, no good training, disaster pending! But I made the first part, so continued. 2 turns-->splat. 3 turns-->splat. A few more turns-->face plant--I've never done that. So Charlie started taking out the tether...
enter competitor Beth--no, no... no way I have gone this far and I'm not finishing this thing, even if it's not pretty. So off we went. It wasn't pretty. But I finished. Charlie: "And that's a Bonanza." (Bonanza is the name of the run).

Yes, odds stacked against me, with me thinking there would be no harder runs this year off-tether. Wrong.

That night I truly thought my nose would explode, or I might explode in a cough attack. But I was back the next day, this time with instructor Michael. We did Bonanza but he convinced me to add half of Columbia, much harder, to the end. And it was better. And for this I kept envisioning Jean Ann (old coach who now has ALS) at the trees, watching, telling me not to let the fear win. And mostly, it didn't.

So, there are miracles in life, including that Lori didn't think I could manage the hotel thing without Grandma or Dave. I told her there may be things in life that seem impossible, but you should try them and maybe ask for a little help. And then those things become possible.

Competitor Beth. Jean Ann there in spirit. Perhaps God somehow watching all of this in support. What was definitely impossible was actually possible. Against the odds--turn it over to God, and know that no matter what happens, no matter how many crashes, no matter whether there is actually success, God is there. Thanks be to God.

A rabbi and a priest - have a little faith

I just finished the book "have a little faith" by Mitch Albom ("Tuesdays with Morrie"). The book was just sitting there, on the bookshelf at the bookstore, and caught my eye (I love bookstores).

This book is the true story about interactions Mitch has with the longtime rabbi he had growing up, and a priest struggling to continue a parish and provide for the homeless in a poverty-stricken area of Detroit. It begins with the rabbi asking Mitch to do his eulogy (although the rabbi, or "Reb," is not sick) and ends with readers feeling they can impact change, that change can occur by having faith, by looking up, regardless of whether we are Christian, Jew, or something else. "It's the blending of different notes that makes music," the Rabbi says about different faiths.


"Reb" carries faith strongly throughout his life. When his young daughter suddenly dies of an asthma attack in the 50s and he was angry with God, his faith also soothed him, reminding him that we are all "frail parts of something more powerful," and that he was blessed to have his child for a few short years. He stayed with the same synagogue for his life, continuing to go there after he retired, continuing to counsel people, continuing a simple life. He didn't push other people to have faith, yet Mitch found his faith restored in getting to know the Reb well over 8 years.

Henry, in Detroit, has a different story. Henry is a former drug dealer and user, who traded a life of wealth and corruption to a life of poverty and commitment to God. One might wonder if Henry is trying to "score points" to enter heaven. But Henry doesn't waver in his beliefs ... "What I do here, for the rest of my life, is only my way of saying, 'Lord, regardless of what eternity holds for me, let me give something back to you.' "

Two very different lives, lifestyles to an extent, belief systems. One God. "If you're looking for the miracles God can do with a life," Henry preaches, "you're looking at one." "Seeing Henry that day, being cheered by all those new faces, I believe, as the Reb once told me, that, with a little faith, people can fix things and they truly can change."

A truly impactful book which helped my faith grow, and helped me realize the extreme poverty faced by many. We can all choose our own causes and allow faith to lead us down a path of giving. And we can create change.

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www.aholeintheroof.com (website for A Hole in the Roof Foundation, linked strongly to Henry) "to help faith groups of every denomination who care for the homeless repair the spaces in which they carry out their work and offer their services."