I’ve learned a lot this week as I’ve prepared to be your race pacer for tomorrow’s marathon. This is an important task that I’ve been asked to do. I didn’t want to go into this lightly.
Tomorrow I will be with you in spirit. What does that mean? How will I do that? One of my favorite book series has always been the “Wrinkle in Time” series by Madeline L’Engle. She writes about a special way of connecting with another person that transcends space and time. It’s called kything. The word “kything” comes from the Scottish word “kythe”, which means “to make visible”. Madeline L’Engle uses this word to describe a spiritual connection with another person that is not dependent on words or sight or touch. In some cases, a person almost becomes one with the other person, seeing what they see, feeling what they feel.
Can this be done? There are people who say it is possible. There has even been a book written about this subject by Louis M. Savary and Patricia H. Berne, called Kything: The Art of Spiritual Presence. It is considered a handbook on how to kythe. I have had experiences that have come close to what is described as kything. I have never been able to explain them nor would I want to. All I can do is describe what happened at the time. I do know what it is like, for a very short time, to experience what another person is experiencing. Whether I have a particularly vivid imagination or whether this is a true spiritual connection, I cannot judge. I do know that it’s incredibly powerful when it happens.
What will I do tomorrow? For you, Daniel, I will connect to the broadcast of the race then I will try to be still and connect with you. I don’t know what will happen.
I wish you strength and lightness of heart! Tomorrow we’ll fly!
Terri
]]>Once I was home, the need for rest had to be taken seriously. I took a nap then later sat down to look at some of the details and history of the NYC Marathon. I’m afraid I didn’t get very far. I got sidetracked while I looked at the website belonging to Daniel’s wife, Melissa Clark. If this name sounds familiar to you, I’m not surprised. She is an excellent cook and writer and she puts these talents to use writing articles about food for publications such as The New York Times, Bon Appétit, Travel and Leisure, Forbes.com, Real Simple, and many others. She’s written cookbooks and there are even YouTube videos featuring Melissa! I was technically resting, but I was getting hungrier and hungrier. We ended up going out to dinner to Patsy’s Inn, a lovely, fun, and funky Italian restaurant in Denver.
As this is my rest day, I will not write much. Tomorrow, I think a few more short sprints will be in order, just enough to make sure I’m in proper shape for Sunday.
Thank you to everyone who has contributed to Daniel’s efforts so far! And thank you to Daniel for running and to Melissa and Dahlia for always cheering him on.
G’night!
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Daniel doesn’t know it yet, but I read his journal on running to get tips on how to pace myself. I figure that every day is a small marathon to me now and pacing is critical to my getting through till evening. If I don’t do it right, I’m a little weird when it comes time to cook dinner. My family doesn’t always appreciate the way my arm flies around the kitchen as I attempt to cut vegetables. I need more training; I admit that. It’s time to consult the master. As I am also his race pacer on Sunday, it’s even more important that I understand how to train for a marathon.
Following Daniel’s training guide, I will work on the following: (The bold words are Daniel’s. See his article titled, “You must not love the bear” at http://longrush.blogspot.com/2009/09/you-must-not-love-bear.html.) Here is his guide, with my personal goals added in:
1. Long tempo runs, executed with patience, toughness, and playfulness: Daniel runs 9 miles just because they are there. He likes to run with other people and keep up with them. Sometimes it is good to push myself, to have a “long tempo run” day when I clean, bake, work on artistic projects, and maybe even chop down a tree or two. My mantra on those days is, “If I do this now, I’ll feel useless later. If I don’t do this now, I’ll feel useless all day.” Trust your training.
2. Bounteous training table: I have to eat right. We try to have as much organic food as possible. I absolutely must have a good hearty breakfast with plenty of protein. If I fudge on this one, I pay for it all day. If I have fudge for breakfast, I have no right to any sympathy. Daniel’s wife, Melissa, writes about food for a living. I suspect she’s an awesome cook, too. Trust your training table.
3. Recovery days: It was so nice to read that even Daniel takes a day off from running! Days off are a must for me, too. After a “long tempo run” day, I must have a day of rest. I’ll start looking at these days as “full rest days between workouts”. It sounds better than “crashing”. Trust your rest.
4. Training with others who run more consistent and tougher paces that I normally would. The best new thing I am doing is Yoga with Paul Zeiger. Paul has Parkinson’s, too, and he started teaching yoga long before he received his diagnosis. He and his wife teach this class for people with Parkinson’s and their spouses/caregivers. My husband, Chris, comes too. So does Chris’ brother and sister-in-law. His brother has Parkinson’s too. Our teachers watch and see what we can do then challenge us to take it just a little farther. Trust your training partners.
5. Meditating: I was very good at spending time meditating every evening for several years. I let that go somehow, probably because I thought life was getting too busy. I should know better. The busier my life is, the more important it is to meditate. It’s that time when my body and I get in sync with each other. It’s time to let go and relax. If I can relax and meditate for an hour each day, I can certainly trust that I can focus and be with Daniel in spirit during the race. Trust your inner Zen master.
6. The baby teaches me: Hmm…Daniel has a beautiful baby girl who teaches him the “value of patience and the big picture”. I’ll have a grand baby to teach me in a couple of months. For now, I will have to change this one a little. My family and friends teach me: One of my favorite Buddhist sayings is: “Be grateful for every person who comes into your life, for they will show you where you are stuck.” I could be very specific here but it would take up too much time and space. So many of you, my family and friends have been there just when I needed to stop worrying about myself and the details, and look instead at the bigger picture. Sometimes this is done with a nudge, sometimes with a kick in the pants. It is always appreciated, though not always at the time. Trust your outer Zen master.
These, then, are my training goals for the week. Is there anything else I would add to Daniel’s list?
7. Find your rhythm: I suspect that Daniel does this automatically at this point. Sometimes I need some outside help so that I can find my rhythm. The outside help is often in the form of music. If I can listen to music, I can find my pace. If I listen to music, I can walk longer and faster. If I can dance a little to the music, I am not as apt to fall. If I start to have dyskinesias or some mild dystonia, I can always start singing and dancing. It might help and even if it doesn't, it'll look cooler. Trust your inner dancer.
That’s all.
Today was a long tempo run. I got up and made a good breakfast for my husband. It was his birthday and I wanted it to be special. We were limited in what we could do outside the house as it had been snowing steadily for the last day and night and we didn’t want to drive in two feet of snow; so I baked a cake and brownies and chocolate chip cookies. I finished sewing elves for my Christmas fair table and I cut and folded paper for greeting cards. I also did 35 minutes on the exercise bicycle and 20 minutes of yoga exercises. After a short nap, I made dinner for my family and then cleaned the kitchen. It felt good!
I think tomorrow better be a rest day.
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I wasn’t planning on running a marathon. On the whole, marathons have not been on my list of top priorities. The New York City Marathon is different, though. This is a big and very prestigious race with somewhere around 42,000 runners; and those are the ones who were chosen to participate out of over 100,000 applicants. When I received the invitation to be a part of this, I couldn’t refuse. Who could?
Okay, so I’m not going to New York and I’m not actually running, but I will be there in spirit. My cousin, Daniel is running in the race with Team Fox, raising money for Parkinson’s research. When I found this out just the other day, I was touched beyond words. I suggested that I’d like to be there running with him in spirit, but that I’d probably just get in his way. He wrote back to say that he’s counting on me to be there in spirit, helping him to pace himself. I’m his race pacer!
This means I’m officially in training, too. Daniel reminded to rest and told me not to abstain from too many treats. I took that seriously and had a nap this afternoon, in between Yoga exercises and cooking dinner. I’ll still limit my sweet treats, a little. I’ll have to decide whether to have just the chocolate ice cream or just the Bailey’s.
I can’t wait to follow the race via the internet on Sunday! Here’s all the information you need to follow along with me and Daniel.
Daniel’s Team Fox page: Team Fox Member - Team Fox. If you scroll down, you’ll see his race pacer. You can also support Daniel’s efforts (and mine) by donating to Team Fox.
Daniel’s blog: “The Long Rush – Exercises in Style” at http://longrush.blogspot.com/.
The New York City Marathon page: http://www.nycmarathon.org/
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I’m much better now at remembering where the school zones are. It only took two traffic tickets to etch that into my memory. Now I gloat when, after slowing down to a 20 mph crawl, a car behind me honks, speeds around me, and is instantly nabbed by the police who are hiding around the corner. I’ve even gotten to where I enjoy these school zones. It’s a fun game of “who’s going to get caught?”
Slowing down is something I do well these days. This says a lot; because there isn’t much I do well these days. Getting out of bed is now a process; a process of making sure that I’m still all here and everything is working as it should. Feet curling up? Check. Walking in little shuffles to the kitchen where my meds are kept? Check. Vision slightly blurry? Check. Hands swollen and all the joints creaky and painful? Check. Anything new happening muscle or joint-wise? No? Then everything’s cool. I’m all together and ready to start the day. When something new shows up, I’m not a happy camper, but the familiar wonkiness is just fine. After I take the meds, things will even out a bit and the shuffle will turn into a walk, the feet will uncurl, and I’ll be able to see more clearly. Life is good!
During the last few weeks, however, the pace of life has suddenly become faster. Just as I get used to starting slowly, making a big healthy breakfast, and going for long walks with my husband, everything has changed again. This time, it’s not me. Happily, I’m the same wonky person I have been for the past year or so. Granted, I do freeze up now and then, but that’s okay. I’ve learned a little shuffle dance that can get me going again, and if that doesn’t work, I just stand there muttering “oil can” without moving my lips too much, and someone quickly comes to my aid.
No, the pace of our lives has changed so that we can help my parents out a little bit more. I figured they did enough to help me out through the years; I’d better be there for them, too. I am finding myself multi tasking again. Mom’s recent hospital visit made my siblings and me aware that, though Mom and Dad aren’t doing too badly, they will need help if they are going to be able to stay in their house.
My sibs and I seem to be on the phone constantly, to each other and to various service organizations, attempting to line everything up for them. We’re also working on cleaning and fixing up their house so that it is safer for them. Cleaning, packing, phoning, we are talking about carpeting on the stairway and adding an extra hand rail. Do they need extra hand rails in the bathroom? Do we need to take up the small area rugs? We are also making sure their legal and financial paperwork is in order. We expect, of course, that they will live at least another twenty years, if for no other reason, than to prove to us, their children, that all our work is really just a big fuss.
I tell my Dad that we will go down the road, one yellow brick at a time. Hopefully, everything will settle into a nice rhythm and will slow down again. Until that time, when I drive each day, I’m going to savor those school zones where I have to slow down to a crawl. I enjoyed that today as I came back from taking my daughter to school this morning. I realized just how nice was to drive slowly. A car honked at me and quickly pulled around me and sped away. I started to gloat, waiting for the inevitable police car to come out from the shadows and nab them. Then, I stopped in mid-gloat.
I had passed the end of the school zone 4 blocks back.
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There’s been a movie made about this and so now it’s called a “Bucket List”, meaning that you write down all those things you want to do before you kick the bucket, hand in your dinner pail, shuffle off this mortal coil, take the last bow, and hop on the last rattler. It seems like everyone is making a list. Now it’s not only good and noble, it’s also fashionable.
Maybe it’s time to review mine. Unfortunately, the computer ate it. I think it was the crash of 2007, when I lost my parent/teacher conference notes, family photographs, journal, and found out what an external hard drive is for. Anyway, my list is gone. I do remember a few things. It had a lot in common with my daily to-do lists: finish cleaning my workroom, paint the kitchen, and build a patio in our garden. Not a thrilling read.
There was one item on the list that was interesting; however, that one will have to go. I will not pose nude for a life drawing class. It’s not that I have suddenly become overly modest or that I am worried about my not so perfect body. That’s actually the point. Human beings come in all shapes and sizes and they are all beautiful, even if not all their bits are quite what our society sees as attractive. It’s my humble opinion that all students, beginning in high school, should be required to take a life drawing class and that the models should be a diverse group. But, as much as I sincerely believe in these classes, I have to admit, I cannot do this. I get cold easily now, and when I get cold, I sneeze. When I sneeze... well, let’s just say, it wouldn’t work.
Since my list has vanished somewhere into cyber world, I asked my family and friends for help. What would they put on their list? My daughter wants to ride a camel. One of my sons wants to write a really thick novel, one that he has fully illustrated. My good friend, Eric, would go white water rafting and sky diving. Andrea would take a three week holiday in Greece. Vicki would go to Israel to see the places where Jesus walked, Chris would buy his pickup truck, and Mike would drive to their mountain cabin and spend an entire day hiking with his family.
I’m not exactly sure what I’d put on my list. Maybe I’d add the tandem sky diving experience. I would also like to be able to play a musical instrument, very well. Of course, I’d mostly like to just snap my fingers and suddenly be able to play an instrument! Learning to play is a lot of work.
When I look back on everything that’s happened in my life so far, however, I’d have to say that the most precious moments to me were those that were not planned and would not be anything that I would ever have thought to put on a list such as this. I never planned out ahead of time that we would have a foster child. Who could have known that I would one day help rescue a baby woodpecker and hand feed it for five days until we found a rescue organization? I never planned on working for three years, for minimum wage, in a nursing home. I always planned on having animals, but the baby goats were a bonus. The biggest unplanned event in our lives would have to be our daughter. We hadn’t planned to have another child. She planned on having us, though, and she was and is still our most amazing unplanned bonus!
I once had a dream that my doctor called me at home. In the phone call, he told me that my health issues were much more serious than they had realized and that I only had three days to live. I remember, very clearly, going into a panic for just a moment, then suddenly saying to myself, “What am I doing? I don’t have time to panic. If I only have three days, I need to get busy. After all, I should clean the house and cook a few dinners to put in the freezer, finish the laundry, and call Rev. Hindes. I have to plan the funeral.” My mind was suddenly a whirl of recipes, menus, folding clothes, and choosing my favorite songs.
I did the whirlwind thing for awhile, in a scatterbrained sort of way and then I stopped. I took a deep breath and sat down. I slowly took out a few sheets of good quality paper and a nice pen. The heck with the housework and cooking; and when does one plan their own funeral anyway? I forgot about everything else I wanted to accomplish and sat down to write love letters to my husband, my children, and my friends.
Now, back to my bucket list. I will still start over again. Then I will have all sorts of ideas for whenever I feel the need to rebel a little and do something big. But I also plan to leave every other line blank. I want to leave some room for all those things that I would never think to put on my list. Hopefully, I will recognize them when they happen and then I can go back and fill in the blanks.
And, just in case I don’t have three days warning before I hop on the last rattler, I’ll start writing those letters.
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One of the great benefits of having Parkinson’s, I’ve always said, is that I don’t have to do things like run a marathon. I’ll happily let others do that! I’m built for comfort, not for speed. My friend, Daemon, has tried to tell me how much fun it is to go skydiving. He says it makes you feel like you are flying. I tried to tell him that flying is when you go up. If you can see the ground coming up at you, you aren’t flying, you’re falling. I’m well acquainted with falling already, thank you very much.
However, when little things like this ad for funeral insurance start coming at me, there is a small part of me that wants to rebel. When a salesman was trying to sell long term care insurance to my husband, he suggested that I may well be in a nursing home, five years from now. I glared and thought....And this would be about the time you graduate from high school?
It’s not just the ads. My body has also begun to turn against me again. It happens from time to time. Something new will begin to present itself, usually due to my Parkinson’s. Then for awhile, everything is in flux. Is this just a fluke? Will it go away? Is this part of my Parkinson’s or is this something else? Which doctor do I go to for this one? If it doesn’t go away with time and/or new medications or therapies, then it may be time to adapt to a “new normal”.
Part of my new normal is arthritis in my hands and feet. It’s far worse in my hands and there are many mornings now when I cannot move them without pain, but I get up and stretch them over and over again, working through the pain until they will move a little easier. Being an artist and writer, I would like very much to keep the use of my hands. Let the feet go, if something needs to go; the use of my hands is something I consider vital. I have a grandchild coming, for goodness sake! How am I to get all my knitting done?
If I look ahead too far, it can be pretty scary. I’d like to stay very happily in my comfort zone, doing my arts and crafts, and writing to try and make sense of everything. My life right now is a nice, comfortable place to be. However, I know that I will need to face more changes as time goes by and I will need a considerable amount of courage, if I don’t want my world to become smaller and smaller.
I also want to be a good example to my children, adult children included. In the world today, our children will need to constantly be willing to go beyond their own comfort zones. More than ever before, they will need to have the courage to put their selves out into the world and connect with people. They will need to be flexible and creative in problem solving and most creative in how they make their living. Jobs aren’t jumping out at them.
This means that, if I want to be a good example, I need to go outside my comfort zone – big time. I decided that I should start doing things that I have always been afraid to do. I will start facing my fears in other areas of my life and see what happens. That was the plan anyway. I talked about this with my daughter. She wants me to start drawing more because that’s one artistic skill I do not have in abundance. It is something to try, however, with salesmen predicting my early entry into nursing home care and more ads directed at seniors coming my way every day; my rebellious nature took over and demanded a more challenging deed.
I asked my friend, Daemon, to take me on the XLR8R Bungee Swing ride at our amusement park. I didn’t need to explain all the reasons to him. One of the best things about having a friend like Daemon is that he is so enthusiastic, that when I am with him, I feel like I can do anything. The downside is that his comfort zone is very, very broad. “Cool,” he said, “name the day.” That’s all it took. Was I being courageous? Hell, no! I didn’t even tell my family I was going to do it. I knew that I could easily be talked out of it and, if I wasn’t talked out of it and chickened out instead, I didn’t want to have anyone else know that I failed. If that happened, it would be enough to contend with Daemon.
So yesterday, I allowed myself to be put in a harness, along with Daemon and his daughter, Aliera, hauled up about 5 stories into the air and then, when Daemon pulled the rip cord, we dropped and started to swing back and forth in huge arcs over the amusement park. Never in my life could I have imagined myself doing this.
It was amazing! I loved it! By the time your brain actually registers that you are falling, the fall part is over and you are flying! I actually soared over the park, looking down at all the sorry people who were stuck on the ground. I even put out my arms, briefly. Then we rode on roller coasters and rides that made us spin and go upside down. I concluded that the ride that I had been the most frightened of was actually the one I enjoyed the most. I also concluded that there are a few rides that I don’t want to repeat. I don’t enjoy being upside down!
The best part is what this did for my confidence. The future doesn’t look quite so scary after you’ve dropped 5 stories on a bungee cord. Daemon says that I need to do a tandem sky diving jump next. Then I would really feel like I’m flying. Who knows? It might not be so bad after all!
"Flying is learning how to throw yourself at the ground and miss."
- Douglas Adams
http://www.youtube.com/watch?v=gWfhP0cOffk&feature=related
(This is not us but it is the same ride. We even forgot to bring our cameras. Next time, Daemon says)
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I’m having a hard time adjusting to life at home again. I have to cook my own meals, wash my own towels and make my own bed. There are people calling me and asking me questions other than “what type of dressing do you want on your salad”. Our bank called to replace a lost debit card and they misunderstood me and cancelled the wrong card. I wonder.... Maybe it confused them when they asked for my account number and I answered, “I’ll have the cottage cheese with fresh fruit, please? I’m trying to stay healthy.”
I found out just how easy it is to get used to being on holiday. Our week in Glenwood Springs was refreshing and fun. We walked, or at least Chris walked and I rode, all over the town, everyday. We shopped and didn’t fret about how much money we were spending. We ordered an entire bottle of wine with our dinner.
The scooter behaved well, too. I rode it in and out of shops, down the streets and sidewalks, and I was even able to ride right to the side of the Hot Springs Pool. Glenwood Springs isn’t totally wheelchair accessible but it looks as though they are trying. A couple of times we found beautiful smooth ramps which led directly to a flight of stairs; nothing more, not a door or anything, just the stairs. At the end of the block, the sidewalks were gently sloped as to allow a mere two inch bump instead of a six inch curb to go over. Shock absorbers would be a great idea. The pedestrians were very gracious. They kindly stepped out of my way and let me pass. In fact, they seemed rather eager to get out of my way quickly.
When we arrived back in Denver and I rode down the ramp, out of the train car, the attendants stood in a semicircle around the ramp and sang, “She’ll be coming down the Mountain when she comes...” It was a touching moment and a nice welcome home.
The scooter is still getting a good work out. I take Chris out for walks every day. I generally walk him for twenty or thirty minutes, then take him to the park and let him off the leash. After a good romp, it’s time to head back home.
Now that we’re back, our attention is being demanded all around the house and garden. The garden has been the most demanding. On our first day back, we picked four and a half pounds of green beans and nearly that amount of snow peas. The lettuce appears to be bolting but hasn’t gone to seed yet so we’re still providing the neighborhood with salad. It was a bit disappointing to see that the zucchini hadn’t produced much. I had to buy a few more just to make a batch of pickles.
I am back at home and back at my routine. It’s good. I have been writing up my to-do lists and getting through most of the tasks each day. I’m looking forward to having friends working with me in the studio next week. I no longer look for the little bars of soap when I go in the bathroom and I haven’t left a tip on the dinner table for several days. Life is back to normal and tomorrow I’ll get up and work in the garden and clean my house.
I’d better have an early morning wake-up call...
...and some White Zinfandel for dinner, please.
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There are all kinds of things that I plan on doing someday. Someday, I plan on finishing my book. Someday, I plan on writing down the Grandmother Willow stories. Someday, I will have the studio finished. I could go on and on, but you get the idea. When will someday turn into now?
This is part of why I am so happy that we have come to Glenwood. Of course, the biggest and best reason for taking this trip is that Chris and I can spend 6 days together, just the two of us. We have had a marvellous time wandering around the town, shopping, swimming, and today, we even rode the Tramway up the mountain! Chris was rightly proud of this accomplishment as he has a serious fear of heights.I have been most excited about wandering around the town and shopping. I can do that now because I am not concentrating only on keeping myself upright and moving, as I need to do if I am walking.
My new scooter is part of how we made our someday become today. Parkinson's is a strange disorder. My neurologist refers to it as a designer disease because it affects different people in so many different ways and our reactions to medications are also very different. There are some days when I don't appear to have any physical challenges whatsoever and other days when I have difficulty getting around in my house.
I met one man whose Parkinson's wasn't at all visible to other people. When a friend of his, whom he hadn't seen for several years, came to town, she didn't believe that he had anything wrong with him and she actually became angry with him for worrying her with his story of having Parkinson's.For those friends of mine who see me only when I am doing well, they might wonder why I would even think of getting a mobility scooter. Isn't it important to exercise when you have Parkinson's? And why would I want to make myself look and be more disabled than I am?
My answer to these questions is simple. I am not trying to be more disabled, I am trying to be more mobile. Over the last 7 years, I have given up a lot of activities that I loved, just because I knew I could not do the walking involved. I didn't go to festivals and fairs anymore. I wasn't able to take long walks or opt to walk with my children to the library instead of taking the car. I didn't go to museums or shopping malls. Some places have simple non-electric wheelchairs that can be used to get around but that really makes me feel disabled! I don't have the strength to push myself through a museum so I would be dependent on someone to push me. Walking will never be the way I get my exercise because, after a half a block or so, my dystonia will kick in. My physical therapist agreed with that. With my scooter, I am able to do things that I haven't done for 7 years. I am more able, not more disabled with my scooter. Why wait till my disease has progressed to the point where I can't get around any other way? I feel good now and I want to do as much as I possibly can do, now!
Why wait for the someday that may never come? Having successfully accomplished so much on this trip, I now have renewed energy to bring home with us. I am determined to make many more somedays turn into todays.
First things first, however. We have just spent two and a half days wandering around the town and being very busy.
I think I need a nap.
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I guess I did leave everyone in the dust. Patrick took this photo of me on my new mobility scooter. It's funny, but everytime I looked at the photo, something had changed slightly. The tattoo is new. I know it's hard to see, but it's a large red heart with MOM written across it.
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