Time to Start Again

When I stop and recall the path of years that have lead me to where I am today, I find myself bewildered at the pace at which they passed. I’m 51 now, old in the eyes of the young. Yet I don’t feel old, as I’ve seen old, as I imagine old. I feel enlightened in some ways, a bit worn by emotion and experience, and a need to find a productive and fulfilling trail that will make me happy through the remainder of my life.
I recall the wedding, 27 years ago, but those recollections are foggy. With clarity I remember when, 24 years ago, the doctor told me the baby’s due date was December 22. I was as high as a kite until I realized the timing. Luckily he came along on the 12th of that month in 1986, which seems about a decade ago. I’ll never forget crying in the shower with the ‘baby blues’ as I’ve heard it called. I felt overwhelmed and lost in a changed life. In 1990 I had a girl and no blues.
Each kid started toddling and talking, soon they drew, learned to read a bit, ate macaroni and cheese with hot dogs, watched cartoons, listened to stories, played with Lego’s, dinosaurs, and Beanie Babies, rode their bikes, made giant cards for mother’s day and father’s day, joined scouts, played soccer, made friends, and developed culinary likes and dislikes, and grew older. Soon they were doing math we couldn’t help them prove, then came the next phase.
As the years past and they entered the Jr. High and High school years, I noticed that parenting had changed. The work was less laborious, yet more difficult. My husband and I had entered the phase of mind games. We were always watchful but now we had to do our homework. It helped to be on the same page and prepared. We learned that the terms we had used for drugs changed along with the math. We changed the doors of the den from wood doors to doors of glass and wood which made the computer visible; I checked the history on it as well. Conversations were welcomed but not always achieved. When they wanted to go out I had my questions and they had their replies, why, why, why, why? Soon they gave up and told me what, where, when, and who plus another phone number.
As our babies morphed our parents grew older, grew old. My parents had moved to be near us so I could help with dad. Life had other plans. Soon I was caring for my dad with Alzheimer’s and my mom with cancer which was detected after the move. Thank goodness I have a sister who would come to the rescue. I was then having some physical difficulties myself, I put it aside. In 2000 Dad died, months ago it seems.
There was now school and work, but no extra cars. The van was used as a shuttle and was borrowed. My son had his license and would take it to work after school and occasionally to meet with friends. We assured him it was a chic magnet, but he didn’t believe us. Soon he had his first car, in need of tlc.
My mom was holding on and fighting hard as the kids approached adulthood. My neurological condition was discovered and I used a cane to walk. I took my mom to the hospital each day for radiation. She carried my can and hers while I pushed the wheel chair through the building. She would ask if I was alright and not to go too fast. Being a mom never stops. Mom lost her battle in 2007, just weeks ago it seems. While distributing their belongings my sister and I found items we had made in school and fabrics used when we were little kids. There were pictures to sort through too. We found fun times to help with the rationing of what had been two people’s lives. The condo sold before the housing market came to a halt. I drive by that street nearly every day, but don’t look down it.
The time had come when college was finished for my son. He had a friend in Vegas who he’d kept up with all along. My ‘kid’ needed to leave the nest. In May, his friend flew in and they drove out, out west in a loaded up, low riding, Pontiac Vibe. He took what was necessary, clothing, guitars, speakers, an amp, and a big flat screen TV, amongst the big sub woofer that was in the car.
My daughter and her boyfriend found friends to share a rental with. She decided to pause on school in order to make money to pay rent. She moved out weeks after her brother. Her room is unused. I’m not sure of her future, but if she has to return she’ll not only bring her belongs but mortification as well. I’m hoping that they will find a way.
Then came Christmas, one of the toughest holidays of them all, for different reasons; shopping, wrapping, cards, decorating, cooking, memories of loved ones and now a quiet house. What did you do for Christmas? I was emotional. For the love of Pete, songs, conversation, Christmas movies, pictures, and bumper stickers, any of them could cause my eyes to well, often the dam broke. I was wrapping items for my son’s Christmas box and wiping my cheeks. After dropping it at the post office the Christmas music was changed to rock because it’s hard to drive when you can’t see. On Christmas day Marie’s significant other slept in order to work a night shift, but Marie spent the day with us and her Aunt and Uncle. She complemented me on the food, talked as if she didn’t mind being with us, and said “I love you too” when she left. Who was that? My son called to thank us for the gifts and to tell us that he’s going rock climbing, no deer and snow there, dust and donkeys. I did the mother routine and told him to be careful. He told me not to worry because his knife blade is very sharp.
Now Christmas is over and I’d like to get the trees down. I don’t like to look at them. I’m glad that I can talk to my kids and they’re healthy, and pretty happy despite the struggle, but I feel a bit lost. One day after Christmas and a hard work out, that left me feeling as ripped as Mark Wahlberg looked in The Fighter, I found myself crying in the shower, sobbing. I grinned at one point when I realized that it felt similar to when I had those baby blues, a mere 24 years ago.
Life has changed. It happened so fast I feel as if I’ve lost my way. The kids are still around and they still need me, but it’s different, I feel emptiness. However, I’m strong and I’m not alone. I will pursue the things that give me a sense of productivity, fulfillment, pleasure; writing, reading, pushing hard at the gym and enjoying movies and rating them on Facebook. This week I’ve seen two movies and will see a third, I’ve added my Christmas books to my list of books that I hoard and I have truly felt some sort of healing while composing this exercise. A fulfilling and productive part of my new life will be to write each day whether a little or a lot. Good medicine.

12/30/10 11:30 p.m.

When Life Changes You

It doesn’t make me laugh, so I won’t say it’s funny. It’s actually interesting how I find myself becoming emotionally affected by something that’s been slowly changing my life for about 20 years.

I walked four miles at top speed most days. At first it wasn’t much, but I began to notice a simple scuff of the toe once in a while. I turned into a task to see how many scuffs I could avoid. Most days were good. I figured it may have been the weather, or the onset of a cold that affected my walk, but eventually the scuffs were winning.

Deciding to move in ’94 was emotionally hard for me because I had come to know a good deal of people in the neighborhood. After the closing and during the waiting I didn’t feel well, I felt anxious and found that my hair was thinning. I don’t remember time periods but I began to feel better and the hair thickened. Well, I was anxious and a bit depressed.

Soon the time had come to sign the kids up in a new school. I then found myself, how should I say, in distress regarding the lowest region of my digestive system. One doctor couldn’t find anything wrong and suggested more fiber. I found myself at a lovely number on the scale after five miserable weeks. So a different doctor gave me a pill and I eventually became ‘regular’. Okay, so I was nervous.

We were soon settling into a home which had formally been owned by people who like different shades of white. The woman’s hobbies were scrubbing grout and washing windows monthly. She probably unscrewed and wiped down each light bulb too. So, there I was with a young girl and boy ready to make it homey. I unintentionally tried to keep the house as I had found it, but that didn’t make me a happy. I developed bladder spasms. Wholly Mother of Pearl this went on for a long time until my final urologist gave me a pill to relax the bladder. I then eased off regarding the house and decided to live in it. I was just overwhelmed I guess.

We live across the street from Stoney Creek Metro Park and each day I walked before work. My speed walks had slowed. I watched for birds and sketched wild flowers. I found myself becoming quite familiar with both. One cold day an ache occurred in a calf, and then cold spots and soreness came on regardless of the temperature or my activity. I was referred to different specialists for muscles and bones.

I had a body scan which showed a scar on my thyroid. Well, that explained feeling miserable the hair loss years before. Then I had a series of MRIs and the pleasure of a spinal tap. Days later the Neurologist simply told me I had MS, spoke other words, and left. I found myself at the nurses counter staring. I spotted my doctor and asked to speak to him. We stepped aside and I ripped him a new one, told him that the he was much too detached, leaving me sitting there as if I may as well have a cold and in the mean time what do I do now! He put his hand on my shoulder, apologized, showed good ‘bed side manner’ and told me to call him any time at all, and I did. I wanted a second opinion. I was sent to Henry Ford where questions and answers confirmed the diagnosis for this doctor. I had begun to have my fill of doctors.

Word came to us of a MS specialist at U of M. Once there and a ten minute of talk and a review of the files he told me that I didn’t have MS and sent me over to a Dr. Fink, Director of the Neurogenetic Disorders Program. I actually walked over to his offices that day! Dr. Fink asked many questions and had me perform tasks regarding balance and the ability to feel vibrations. He had no doubt that it was Hereditary Spastic Paraplegia, which affects the muscles below the waste.

So it took years to find out that I wasn’t extremely frustrated, nervous, tense, or overwhelmed. I was developing a disease. Damn.
After all this time I haven’t let it get to me too much until this year. It’s difficult to adapt to something that is progressive. Walking has become much harder and balance is extremely difficult, but I won’t stop. I get bruised but I won’t stop.

Recently, coming home from a movie, I found myself overcome by a happy energetic ending. The actress ran blocks and blocks and up a flight of stairs. I broke down. I was angry that I broke down, but I was angry that I can’t run, none the less walk, without help. I know others has it worse, but when it’s your life that changes, it makes a difference in your world.
I travel the earth in books, try to write, treasure people and conversation, work very hard at the gym, and enjoy the experiences I find in movies.

I’ve stopped apologizing for being slow and I’m learning to ask for help. In December I wish to attend Noel Night and visit the museums and Library while Woodward is closed. However I can’t do it without the help of a wheel chair. I’m finding that hard to deal with. However, if I’m able to stand up and be heard when I better start listening to those who care and want to help.

11/23/10

4:00 p.m.

Then and Now

During summer vacation I remember my mom coming into our bedroom and rolling up the shades and saying “Good Morning”. We were young so without hesitation we headed straight to the kitchen table. There we would decide between Lucky Charms, Captain Crunch, or whatever else was set in front of us. I’m sure that there was a time when we woke before mom was up, but I don’t recall that.

As time passed we grew out of our bunk beds. I had the top bunk which was no big deal but my sister's hair would get caught in the flat springs of my bunk. The room was very small, but mom and dad found a way to put both bunks on the floor, along with out two small dressers. This gave us room enough to open the door and after one or two steps find our self at our beds. What else did we need, we had the basement and spent a great deal of time outside.

As we grew our sleeping patterns changed and we became difficult to roust out of bed. Mom was a bit like Maude. So, she’d come in and pull up the shades with a snap! She’d also sing Good Morning Sunshine. To this day my sister and I will sing it just to remember and then shake it off. If the shades and singing didn’t work there was the ripping off of the covers. Well, we reached the kitchen table, mumbling while reaching for our favorite cereal.

That was a long time ago and many changes have occurred since, too many to recall. It seems as if I suddenly find myself middle aged with a neurological disorder. Some mornings I lay there hesitating to start the day, not looking forward to staggering through and the day. I get up, but my back hurts. Why does it hurt to sleep as you get older? I’m good and sore after the gym but in the morning I’m stiff and my hips and back ache.

I get in to the closet and dress for the gym, I then sit on my bed to put on my sneakers. Not many people call them sneakers any more. I can’t walk without shoes so it’s a necessity. I make the bed, fluff the pillows, grab my walker and head to the kitchen. No Captain Crunch here, no, just dishes from snacks had the night before and left over coffee. My daughter is sleeping and my son is usually at work, so I’m usually on my own. I turn on the TV, check the calendar and go for the oatmeal and a banana. Watching GMA I make my to-do list trying to keep it short. The after cleaning up the kitchen I take my vitamins, check my calendar, turn off the TV, and head back to the bedroom to put on my war paint, do something with the hair, grab my gym bag, my purse, the to- do list and get into the car after which I curse and go back to the house to get the grocery list sitting on the counter and finally I’m off, without much time to spare, as usual.

Now it’s oatmeal and out to the gym and grocer, but I’d love a bowl of Captain Crunch and a bit of Hide and Seek instead.

Somedays...................

Some days suck when nothing goes wrong. Today was sucky but everything went smoothly. I went to the gym, had my hair done, went to the C.U., Meijer's, the Post Office, and the grain elevator.

So, why was it sucky? Because while dragging my feet, as I tried to pick them up, I lost one of the leather pieces from the bottom of my sneaker, the car key is stuck in the ignition so I have to go to the dealer tomorrow, and I'm tired of trying to walk normal. It's not working and I've had enough.

I just finished an essay for my writer's group and I'm going to slip into something soft and fluffy and chill out for the next two or so hours.

I try not to complain but this Spastic Paraplegia can be a pain in the..... (Place where ever you like!)

9:25 p.m.

One Day at a Time

I can remember waking up, climbing out of bed, throwing on my robe, getting the kids organized and heading for the kitchen. That sure feels like a long time ago and it was. The 'kids' are now 20 and 23, so I haven't had to get them organized in quiet sometime. However, it's been years now since I've been able to just climb out of bed and head to the kitchen.

It's been about 15 years since I started having difficulties walking. It was simply scuffing once in a while, then after a time I was not scuffing once in a while. Well, all the rest is history. I use my walker through out the house and also have to leave my shoes on to walk. (That used to be a no-no.) When I'm feeling suborn I walk without the walker and find myself grabbing onto furniture and door frames, much to my frustration.

My morning usually begin about a half hour or so after Bob leaves. I turn on GMA for a bit. I know that I'm headed for the gym, so after thinking my other plans for the day I swing my legs out and carefully walk to the bathroom. I shower at night because morning showers fatigue me, so I dress for the gym, put on my sneakers, make the bed, grab the walker, and head for the kitchen. (If the kids aren't on their way to work or class, their in bed.)

I sometimes find myself getting a bit frustrated at breakfast. Now, I shouldn't complain because I don't really have it that bad, but grasping at counter tops, balancing while reaching in the fridge, and concentrating while carrying my oatmeal bugs me a bit!

After applying my war paint, fluffing the hair, and packing my clothes in the gym bag, I head to the garage. Getting out to the car with my purse and gym bag is sort of like being in the fun house. Descending the steps while closing and locking the door with one hand and holding everything else in the other, is a balancing act. I keep a cane in the car so my right hand is free. I carefully walk, stepping down again, and touching a metal shelving unit for balance. When I had the van I always bumped the hanging garden tools with my gym bag as I open the doors and put items inside. Now I drive a car and have more room to move without hearing the chiming of the garden tools. Once seated I feel and a sense of control and safety, no more holding on or dropping things. Yes, I'm in a car headed for the road, but I feel saver than moments ago.

At the gym my trainer is an angel and looks out for me. She's near me for difficulty with balance and she gets all the equipment we need. However, that's two days a week, the other days I do my best not to bump into things. When working with weights I have to carry them to where I'm working. I usually do pretty good on my own. A few regulars help out with out being asked. They're great guys. I'm sure some wonder if I'd be offended by asking, other's just don't see me. It's obvious when I have to excuse myself in order to get around them. (meat heads)

This my day, at the gym, home, store, where ever. Some mornings I'm not so anxious to jump, so to speak, out of bed. Some mornings I have to talk myself into it. I discovered a movie that I've seen many times already. It's called Sunshine Cleaning with Amy Adams, Emily Blunt, and Allan Arken. She, Amy Adams, doesn't have a disability, but has to deal with some hurdles in her life. I like it because she starts her days telling herself that she is strong and she can do it.

On my mirror I have a piece of paper that says, 'Once day at a time.' It's not for AA, it's just for getting through each day and feeling that I have some power over that day.

9:00 p.m.

Life and what I Really want to Do.

It's hard to believe that it's March already. My last entry was in January! I had intended to be more active with this blog, however life sort of took over. Now, what does that mean exactly. Has life taken over or have I neglected to engage in the activities I enjoy. I go to the gym each morning, then Meijers once or twice a week, and then the usual laundry, cleaning, and on those days when I work out and go to Meijers, I have to nap. Then there's dinner and clean up and before I know it it's seven or so and my writing thoughts start to diminish.

During the day I think of things that I may make a good essay, but to get to the computer and not do other things has become more difficult. I'll have to have a talk with myself. Life is short and unpredictable and I don't wish to go out having done the same old things day in and day out when I have a desire to do something else. It would be different if I didn't have the time, but I do, I just don't manage it well. As my mom had said, "No one notices house work unless you don't do it." I have to admit that sometimes it's just the same thing each week. We can all relate to that in some way.

8:15 p.m.

Getting Up From the Floor

If anyone with spastic paraplegia, or another leg difficulty happens upon this, they'll understand completely what I'm referring to. I'm 5'10 so I have no problem reaching items that are stored up in the cupboards. Actually I'm unable to hide items from myself, like chocolate. I know it's there and I can reach it. However, there are several items I use frequently and are down near the floor. All the way down past my knees, past the point of unaided return. It depends on the day, some days I'm able to retain good positioning and just push up. Thank goodness I'm flexible, my hands stay on the floor to help. However, there are those other days. Perhaps I had done too much on the treadmill or a great deal of walking else were. In any case I become stuck. I find myself down on my butt working to get my legs under me while reaching for the counter or perhaps working my way over to the walker for assistance. (I love M.P. and liked that they were down on their fanies.)

Is exercise causing the weakness or progression? Most likely it's a combination of the two. At the gym, when I have to come up from the floor, my trainer will offer her arm. I seldom take it, explaining that I can do it, she high fives me once I'm up and steady.

Sometimes being down on the floor isn't only physical but mental. Some days the shuffling and stumble will send me down. That's when I have to figure out how to handle it. It often occurs as dinner time approaches and I haven't many choice but to 'soldier on'. That's when I often put in a favorite DVD to help me escape while preparing supper.

One time, recently, I called my closest friend who lives six hours away. I was on the verge of tears and she listened. As I talked I started joking. Her laughter was lovely. Her friendship is precious. She's great medicine. I'll be calling again.






Actually I'm planning a trip to Scotland and England with my friend next summer. We're looking to visit Edinburgh, York, and then London! I'm excited and intimidated at the same time. Yes, it's all about the legs. I plan to call her in hopes to arrange a visit this spring. That way we can have a good talk. She wants to go. I just want to make sure she's cool with everything.

As I wrote that last sentence it sounded silly. Yet it's easier to be on the 'helping and working with' side of a situation than the 'needing and hoping everyone's happy' side. I'm sure someone out there understands.



6:00 p.m.

I'm Back, from now where.

Well, I'm not sure who looks at these, besides some family, and by now they may have given up. It's just been hard to write during the holidays. I usually find myself distracted by all that I choose to do. I wrote an essay for the writing group last week for the first time since Halloween. It was great fun using the thesaurus and dictionary.


I made a new purchase just the other week. I had been looking at this book for sometime at Borders but at $45.00 I wasn't picking it up in a hurry, until one day I received a 33% off coupon from Borders on line. Now its mine! Yes, the Chambers Dictionary of Etymology is all mine. Pardon? What is Etymology? Well, to word geeks like me it's one of the most fun books around. Etymology is the study of the origin and development of words. This book contains over 30,000 words. For example, the other night I just flipped to a page to learn about a word.





"aback adv. Probably before 1200, developed from old English (11th century) toward the back.
The idiom taken aback was originally a nautical term meaning caught by a bead wind that presses the sails back against the mast. The figurative sense "caught suddenly by surprise" appeared in 1840 in Hood's Up the Rhine."

Now this is probably dull and boring to many but..........I love it. I'm also looking into the black plague and the Great fire of London while finishing up The Blind Side.


The Blind Side was a great feel good movie, true story and all, but the book isn't a story as the movie is. It's more of a lesson on football and the evolution of the game and the positions played and the how the game changed in the '80s from a lot of running to more passing. I'm hoping to go into the '10 season with some knowledge under my belt.


Well, that was eclectic. (I like eclectic)

7:30 p.m.