Oct. 3, 1998
Have you ever laid in bed wondering what direction your life was going to take? Or sat up all night pondering the decisions you've made over the years and wondered where you went wrong? Or how about spending hours on end comtemplating what will happen to you now? Mainly I ponder the same question over and over. The question being....why find what I finally want out of life, only to wonder if it will ever be all mine.
All my life I seemed to have acted on what I was supposed to do, who I was supposed to be, what was expected of me. I spent so many years living like this that I never seemed to realize that my life was my choice. Mine and mine alone, to do with however I wanted to. I always derived my happiness from doing for other people. While this is an honorable trait, it's not one that will eventually bring you total happiness.
Eventually you are reminded that not once have you ever done something for yourself. To do things for your own pleasure in life. I had a talk the other day with one of my best friends. We spoke of many things, the one thing that has remained in my mind since then was our talk about soulmates. We are both believers of this concept. That out there somewhere in the world is our other half. The person that makes you feel totally complete. The person who compliments you perfectly. What you lack, they possess, and visa versa.
I suppose most people either believe this theory and spend their life in search, or they dispel this theory as garbage and just live. I was never aware that I was searching until I found that person. It was like a bolt of lightning hitting me from out of a clear blue sky. One moment you're going about your life like normal, the next second you know. I think if someone had ever said such a thing could happen to me I'd probably die laughing. But I'm no longer laughing...it's happened to me.
I've always been a believer that things happen for a reason. Most of the time you never understand it as it's happening to you. It's only years later, after the dust has settled, that it comes to you clearly. I've spent a long time thinking about the things that have happened to me, both good and bad. I've also tried to piece together the whys of it all. Some of it I can see clearly now, some of it is still bathed in dense fog.
What I do know is that I was destined to be in this spot at this point in time. By "this spot" I mean all of it, the separation and impending divorce, my failing health, the loss of a beloved parent, and the begining of a new life for myself. I can see little things now that I was never aware of long ago as it was happening to me. Things that happened to me as a child were meant to make me strong, give me character, and prepare me for what was to happen next. Things that happened to me as a young adult also were preparations for what was to come next. I can even begin to see why my marriage was never meant to be. At times I think I have some of the answers to my health problems. At other times I'm still at a total loss.
What I've not been able to figure out is why spend your whole life preparing for things to happen, only to be thwarted at the last moment. If it is true that there is someone out there who is expressly intended for us, and us alone, then how come most people never meet them? Or even worse, meet them only to find out you'll never get the opportunity to be with them......ever. There is one thing I know to be true, and one thing that has kept me going through the rough spots in my life. This one thing is this....I am loved. Not only loved, but adored, and made to feel as though I'm the best thing out there. Even though we all know that's not possible. Just to know there is someone who loves you that completely is enough to overcome anything life has to offer. I'm one of the lucky ones, I've been found.
Oct. 10, 1998
I suppose as weeks go this hasn't been too bad of one. It just seems like all I do anymore is fight the horrible fatigue and try to deal with the mind numbing pain. My mother suggested she and I get away for a few days and I jumped at the idea. I haven't been on a vacation in over a year and the thought of leaving here sounds so good to me right now.
We've decided that we are going north to Pa. on Wednesday and returning the same day the following week. While we're there we'll visit my oldest niece and her family, then drive to my brother's house and visit with his family. In the meantime, one of my best friends is going to drive out to spend some time with me. I am looking forward to this trip so much. But, I'm also a little scared. Since my mother never learned to drive, all the driving will be up to me.
I'm not too worried about the trip up there, what concerns me is the trip back. I'm not able to sleep on a conventional bed without it seriously affecting my FM. I know the trip back is going to be very painful for me, if not down right impossible. Last year when Pres and I made the same trip, he drove all the way home as I tried to find a semi-comfortable position in the car and sleep. This time around it'll be all up to me to get us home.
I've spent the majority of this week buying warm clothes to take with me, getting my car serviced, making an appointment to get it completely cleaned...inside and out, and visiting my lawyer and doctor in preparation for my SSD hearing Tuesday. My SSD hearing is scheduled for Tuesday afternoon at 2:30 pm. As the time nears my nerves more on edge. I keep telling myself I won't get it, then if I do it will be a nice surprise. But I think the only one I haven't successfully fooled is myself. I know if or when I'm told I'm not eligible for SSD I'm going to be very depressed.
I try not to dwell on it anymore than is necessary only because I'm not prepared for the inevitable answer. When this fight began in Sept. of last year I had hoped I would get SSD. At that time it was soley for money to suppliment my living expences. It wasn't long after the battle began that it ceased to be a fight for money, but a fight for dignity and affirmation. I guess there is also a small part of me that is still a dreamer.
The dreamer in me says....if I can get enough people aware of FMS and it's effects, maybe we sufferers will become more credible to everyone. Not only to our friends and family, but to the medical world as well. No longer would FMS or CFS be classified as a made up illness. The names FMS and CFS would carry the same clout and the same respect to the individual living with these diseases, as would Muscular Dystophy, Multiple Sclerosis, etc.
Oct. 24, 1998
Since returning from vacation last night, I've spent the majority of my day asleep in bed, or on the couch. Getting away for a few days was just what I needed to recharge my emotions, unfortunately being on vacation has taken it out of my body. Here is the account of my vacation, or at least some of the high spots I still remember.
Wed. Oct. 14
I drove for about an hour when the pain started to become unbearable. We stopped at a rest area to take a small break. Since my wheelchair was buried under a mountain of luggage, I had to use my crutches to get to the ladies room. Just a few short feet of walking and I had to stop and take a break on a nearby bench. I wasn't able to drive as far as I had hoped the first day. We ended up staying in Lexington, Va., the home of William and Lee University, as well as Virginia Military Academy, (V.M.I.).
We decided to save money we'd share motel rooms and split the cost of motels and meals. Wednesday night we stayed at a Days Inn. From the outside it looked quite nice. It's amazing how looks can be deceiving! Walking into the room we were faced with the smell of something terrible, badly patched holes in the walls and wood rotting. The room although clean, was in a terrible state of disrepair. We turned on the heat and hoped by the time we returned from dinner the room would begin to warm up and grow on us a little.
Dinner was eaten at a place called "Country Cookin". As my mom pointed out later, just because we weren't in South Carolina we should remember that anything labled "country" cooking should be avoided at all costs. The food was lousy, the restaurant was cold, and the people were less than friendly. Add to that the fact that "dinner" consisted of 6 tiny fried shrimp for me, and a piece of unknown fish for my mom plus 2 cokes cost us well over $20!
Thur. Oct. 15
I awoke early and in terrible pain. I had hoped a nice long, hot shower might help to unwind my muscles, and help to temporarily relieve some of the pain. I turned on the shower, got the water a comfortable temperature and stepped under the force of the spray. Just as I'd finished soaping up, the water stopped. With soap all over me and my hair full of shampoo I tried to grope around to get the water going again. I was able to get it on again, but it came out positively boiling. Once I got the water to a reasonable temperature, it stopped again. After many minutes of swearing and cussing I was able to get rinsed off in ice cold water and get out of the shower.
Mom was waking up as I came out of the bathroom. Since she wears a hearing aid and hears nothing without it, she'd missed the cursing. Once she'd gotten her hearing aid put in I said, "you aren't going to want to try showering today." I then explained to her why. We both dressed, checked out of the miserable place we were staying at, and got in the car in search of a place for breakfast. Our only option was Hardee's. Personally I'd rather eat road-kill than to eat food there, my mom shares my opinion. I found a guy sweeping in front of the local grocery store and asked him "if he could recommend a restaurant for breakfast." He gave me this blank stare, so I rephrased my question....."is there a place other than Hardee's to get breakfast?" "uh, there's a place downtown that makes food, dunno if they make breakfast", was his response. "Do you know the name of this place"? I asked. "nope", he said. As I drove away I commented that now I could see why he was only sweeping! We got on the interstate and drove 20 miles or so when we saw a pancake house advertised. At that point anything would have tasted good.
The foliage was gorgeous, the hills beautiful, as were the miles and miles of cloudless sky and the sun bouncing off trees of all different colors and hues. We turned on the CD player and sang along with tunes from the 60's and 70's as we snapped picture after picture along the road. By 4 pm Thursday night we rolled into the town of State College, Pa. This is the home of Penn State University, nestled in the middle of "Happy Valley" as it's known to the locals. Here we stayed at the Nittany Budget Motel. I guess the word "budget" should have prepared us. But like the Days Inn the night before, it looked clean and nice. I went inside and asked for a room with 2 beds on the first floor that also allowed smoking. What I got was a room at the top of a huge flight of concrete steps.
Between my mom and I, we were able to get most of the smaller luggage out of the car alone. Her suitcase still sat in the trunk of my car. I was nearing the car when she yelled out that she would get it, and not to try to carry it myself. My mother is nearly 75 years old, no way am I going to watch her try to carry a heavy suitcase up a flight of steps, and I yelled this back to her as I approached the car. Thankfully a man parked next to me heard us yelling, he got out of his car, walked over to my car, picked up her suitcase and took it all the way to her room. We thanked him over and over for his kindness. Never would you see a man in S.C. do this for you! Thursday night we ate at the Bolesburgh Inn. It was established in the early 1900's and not only was it beautiful inside and out, but our dinner was terrific.
Fri. Oct. 16
Friday morning we took a ride throughout the town and all through Penn State. Years ago my brother Jim had lived in State College, but I'd never been there before. After a meeting that finished at 2 pm, mom and I began the drive to Frederick, Md. to visit my oldest niece and her family. We arrived in Frederick around rush hour. Since I'd forgotten to get directions from my niece I had no idea which of the 5 exits I was supposed to take. On Tuesday morning I'd purchased myself a car phone, now it was going to come in handy. I called my niece, her husband answered. I explained to him that I was lost and needed directions. As he was giving me directions I decided to try the "hands free" method with the phone so I could concentrate on the growing traffic. That's when I accidently hung up on him. When I tried to redial the number I got a message telling me to wait for my call to be completed. Apprently I was in a "high security" area and the phone company I was using needed my pin number to secure the phone in that area. I explained to the woman that I was hopelessly lost, in rush hour and was trying to get directions from my nephew, could we please speed up the process.
Eventually I was able to get Andrew back on the phone and complete the directions. I hadn't seen he or my niece, Amy, in over a year. I was also very excited to see my great niece, Megan. I was amazed at how much she had grown, but I was also saddened to think she had no idea who I was. Amy had come home from work with a migraine and Andrew wanted to stay home with her in case she got worse, so my mom and I took Megan out to dinner. What an experience that was! My sister had also shown up, and she went with us. I'm glad that she did, just watching Megan was tiring enough without trying to keep up with her.
Sat. Oct. 17
Mom and I took Amy and Megan out shopping Saturday morning. Then we stopped at a place for lunch. We came back and sat on the front porch and talked. It seemed so nice to see everyone, and I hated the thoughts of leaving. But since they already had plans made for Sat. evening we had planned to visit my brother Jim and his family next. So, at 3 pm we said our goodbyes and started north to Hershey, Pa.
Two hours later we were not only in Hershey, Pa. but right in front of my brother's house. It amazed me that after a year I was still able to remember the exact way to his house. We spent 4 wonderful days visiting my brother and his family. My friend Don arrived on Monday, and we took the kids shopping for Halloween outfits, and took them to dinner nightly.
Tues. Oct. 20
Don, my mom and I went to Lancaster, Pa. It was a wonderful day, fairly warm for the northeast and very sunny. We took a ride on an old steam engine train, ate lunch at a Amish restaurant and shopped in several stores. We took a drive through the countryside where we watched Amish families out in the fields working, and we also passed an Amish school where the kids were out playing. On the way home we bought pumpkins for the kids and after they'd finished their homework we helped them to carve out the pumpkins.
Wed. Oct. 21
Mom, Don and I went shopping, then came back to the motel and played cards until 2 pm when it was time for Don to leave. After Don had left I layed down for a nap waking in time for dinner. Then mom and I visited with my brother for the last time.
Thurs. Oct. 22
We started our drive home. The sun was still out and the trees looked even more beautiful on our trip home. We finially got lucky on the return trip and found a nice motel for a change. After a huge breakfast of french toast and bacon we were once again on the road again. We arived home yesterday (Fri. 23rd) around 4 pm. After a stop at a diner for food, and another stop at a grocery store, we had mom home and all unpacked. I arrived home about 5:30 pm. It was a great time of the year for a vacation, and I enjoyed seeing all of my family, but the pain and fatigue have been horrible.
I spent most nights up trying to get into a comfortable position. Usually I'd just fall asleep sitting up in a chair for a half hour or so. My hands are so sore from holding a stearing wheel that typing is almost too much to bear, so this is where I'll stop for tonight.
Oct. 28, 1998
It seems like eons since I returned home from vacation, yet it's only been a few days. It always seems ironic to me how events in our lives can mirror the season around us. A few days ago my mom said that fall had always been her favorite time of the year, and asked me if I didn't agree. To me, fall has always meant dying and the last decent weather before the cold, ice and snow of winter sets in. Although I think the leaves are spectacular, I find myself very depressed at this time of the year.
Fall also is the season when family holidays begin, starting with Thanksgiving. Since I lost my father, holidays have never seemed as bright and sparkling to me. It's almost like I'm living in a completely different world than when my father was alive. I went on vacation in a state of anger and frustration at the Social Security Administration. I came home feeling lost and hollow. Although I had a great time visiting my family and friends, leaving them all behind gets increasingly harder for me.
All my life I've wanted a child of my own. Someone to call my own, to love and cherish, and to watch grow into an adult. My biggest disappointment in life has been my inability to have a child. When I'm near my neices and nephews everything seems different to me. I see life the way they do, and I find I get excited over the littlest things. Just a simple trip to Wal-Mart for Halloween costumes seems exciting to me.
For some reason I've always felt that I never received the love I needed in life. I had great parents who loved me, and who's life revolved around their kids, yet I still felt empty and unloved. When I'm around the kids, and my best friends, all of that emptiness goes away. For the first time in my life I feel whole, and very much loved. To leave that all behind is difficult for me. I guess that's why I feel like I'm just existing these days instead of living.
I find my mind wandering ahead to what I hope to be my new life. I spend hours on end thinking of how I will decorate my apartment, how I will spend my time, where I will go and how I will live. I have one hope that keeps me going day to day. That hope is with me the minute I awake in the morning, and is with me the entire day until I lay my head down at night. Even at night, alone in my bed, that hope is with me. Without it, I'm lost.
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