Shelley Peterman Schwarz—My Blog
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05-25-08
The moment my daughter placed her newborn (my first grandchild) into my arms, my heart filled to overflowing with a love and joy that is impossible to describe. There is no place that I would rather be than in the presence of my (now 3) grandchildren. I’m happy to watch them sleep, play, or eat. Yes, I would love to pick them up when they cry, cuddle them after a bath, or even change a stinky diaper, but I can’t. My MS limits those opportunities.
But there are things I CAN DO that no other parent or grandparent can; I can give rides on my wonderful little Amigo scooter
. To the children at the park, I’m hot stuff! They can’t wait for their turn. I love the activity and know that I am creating priceless memories with my grandchildren and their friends. Today, I don’t dwell on what I’m missing. As long as my battery holds out, I’ve got a very important job to do. Beep!!! Beep!!! Here we come!
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09-10-07
I rarely visit the past. I've made peace with the fact that I have a disability and that I have limits on what I'm able to do. However, there are some times when it's fun to go back and remember "the way we were."
I had one of those experiences last weekend. My brother and his sons were in Milwaukee on vacation and seeing a Milwaukee Brewers baseball game was high on their list. So, Dave and I decided to drive in to go to the game, joining my mom, brother, nephews, and several others members of my extended family.
I hadn't been to a baseball game in Milwaukee since I was a child. I grew up in a family that loved baseball. I remember my mother ironing, listening to the ballgame on the radio. I also remember standing up on my bed with my hand on my heart as I listened to the national anthem. The grass in our backyard had permanent worn spots from running the bases. The screen on our back porch right behind home plate had to be replaced every year. Attending baseball games of any sort was a family affair.
There I was: sitting in the stands with my family, surrounded by the aroma of hot dogs, peanuts, and beer, listening to the sounds of 40,000 people cheering, while munching on a brat. (Trust me, there's nothing like a Wisconsin brat at the ballpark!) If I closed my eyes, I was 10 years old again. Life sure was simple then. Next time I'm having a "blue" day, I'll try to remember that day at the park.
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07-15-07
My husband keeps all our household, car, insurance, etc. records organized.
It's intimidating. I've never been an "organized/linear thinker." (And, MS hasn't helped the situation.) I try to keep up, but in my own mind, I never measure up. As I've gotten older (some would say matured), I've realized that I have other talents that my husband and other "organized" people don't have. I'm more creative. Yes, I jump here and there when doing a task and I'm not always as efficient as I could be, but it's OK. Life would be very boring if we were all the same.
And, if I start comparing myself to others who are more organized and get more done because they work faster, think faster, and move faster, I'm going to belt out Frank Sinatra's song, "MY WAY" and drown out my negative internal voices!
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04-14-07
I'm trying to cool my jets and lay low this week because I have Shingles. Luckily it's a very mild case, because I'm not in any real pain, it's just a very minor discomfort. My only complaint is that it's difficult to wear a bra because that's where my outbreak is on my back. I got treatment early for Shingles and the medication seems to be working. I'm not thrilled with the pain medication I’m taking because it makes me very, very, very loopy. I feel like my head is a balloon that bobbles and floats high above my body. It's hard sometimes to put two thoughts together, find the right word, or remember what I was saying. However, I'm afraid to stop taking the pain pills because I don't want to let the pain surface. I don't handle pain very well.
What's the good that's coming out of this recent health challenge? I'm using the opportunity to read a novel, reconnect with some friends over the phone, and watch TV with my husband. These are things I don't often do and I'm enjoying the change of pace.
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04-10-07
Never having grown up with a pet in the house, I didn't have a clue regarding what it meant to be a "pet lover." That is until we were  "dog sitters" for our son Andrew's dog, Chueco (pronounced SCHWAY-ko). Chueco lived with us for six months while my son took an extended, backpacking trip.
I already had a soft spot in my heart for Chueco because he had been a blessing to our son Andrew, while he was serving as a Peace Corps volunteer in the Dominican Republic. A mutt Andrew rescued off the street, I credit Chueco with getting our son through those first few long, lonely, and difficult months living in an isolated farming community where he struggled with the language and worked to build relationships with the villagers.
When Chueco arrived at our home, my husband, Dave, who had had a dog as a child, instantly bonded with Chueco. Bonding with me took a little longer. But, it wasn't long before my "mothering" instincts took over and Chueco's likes, dislikes, moods, and welfare motivated my day. In addition Chueco's antics and activities became a major topic of conversation and entertainment for my husband and me.
When Chueco left our home to live with Andrew in California, I understood completely what it means to be a "dog lover." I can also understand how a dog could be a wonderful source of joy and fun, especially for someone living with a chronic illness.
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03-25-07
It was a beautiful spring day and we had the windows open, which is very unusual for Wisconsin in March. I had six women over to play Mah Jongg, a Chinese game played with tiles. Three of the women, myself included, knew how to play. The other three didn't and our plan was to teach them the game.
It was a hoot! We laughed and giggled like schoolgirls when we lost our train of thought. We moaned and groaned when we made the wrong decision and discarded something we needed. And we rejoiced and clapped when someone yelled, "Mah Jongg!"
On a day when I could have been alone and isolated while my husband Dave was outside doing yard work and washing the cars, I had a wonderful time building memories with friends. The best part… they want to do it again so we set a time to get together, at my house, next month. Whether the weather is good or bad, I NEED things to look forward to. I believe we all do. It keeps our focus on the future and fills it with fun, friendships, and fond memories.
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03-06-07
A few weeks ago, I went to get my Amigo scooter chair adjusted. I had developed a tender area on my bottom that I needed to attend to. When I arrived at the home health agency, a gorgeous blue eyed blonde two year-old was sitting on the floor playing. I couldn't take my eyes off her. While I waited for my appointment I began talking with her and going through my repertoire of "finger plays" -- The wheels on the bus; The itsy bitsy spider; If you're happy and you know it." Her vocabulary, speech, and hand movements were what I would have expected from a child of her age.
As we sang, the little girl sat in one place with her legs spread apart out in front of her. However, I noticed that she never moved from that spot. And then I saw that she had plastic ankle foot orthotics (AFO) in her tiny little tennis shoes. I knew exactly what they were because I used to wear them in my shoes to help me when I had trouble walking.
After a few minutes had passed, I asked the little girl's mother the nature of her daughter's disability. She said it was unknown and still a complete mystery to every doctor they had consulted. No one knew for sure why her daughter couldn't walk. They were there to pick up her daughter's new, purple wheelchair.
Minutes later, the woman from the home health agency wheeled out the cutest little purple wheelchair I had ever seen. It looked like something perfect for a Barbie doll. It was only about 2 feet tall and on the back there was a long fixed handle for an adult to steer or push the wheelchair. I don't know how much practice the 2-year-old had prior to being put in the wheelchair. All I know is that as soon as they buckled her in, she grabbed the wheels and started moving.
The little girl's mother broke into a huge smile, but tears filled her eyes. I can only imagine how difficult it was to see her beautiful little girl sitting in a wheelchair. But she cheered her little girl on as she began to explore the world as any normal two-year old would do. How bittersweet it was. Once again, I was eternally grateful that I was the one with the disability and not one of my children.
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02-25-07
Yesterday and today we have been experiencing a tremendous winter snowstorm. Eighteen inches of snow, blowing winds with whiteout conditions, and pouring rain. Although we were lucky enough to have our driveway plowed out, the street has not been plowed. When it does get plowed, the snow at the “mouth” of our driveway will be a veritable mountain.
I am so happy to be safely tucked away in my house. My very active husband, who always needs to be doing something, is sitting in the recliner flipping channels to see how many "ball" games he can watch at one time.
It's so nice to be able to enjoy a day like this. It's like the weatherman has given us permission to take a day and just “chill out.” No running to the mall, hardware store, or post office. No grocery store, pharmacy, or car wash. I feel so normal—just like everyone else. My immediate world of Madison, Wisconsin is stopped in its tracks. Thank you, Mr. Weatherman. Today, I'm not alone. Today, everyone is taking life in the slow lane.
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02-15-07
Yesterday, my friend shared a story with me that I thought was pretty typical for couples who have been married many years. She had picked her husband up from work and the two of them had gone for massages. After the massages, they stopped for dinner. My friend enjoyed the ride home, watching a gentle snowfall and reflecting on how wonderful the day had been.
When they arrived home, her husband saw that the snow had accumulated and got busy shoveling. My girlfriend, who had other ideas about how they might spend the rest of the evening, was annoyed that her husband had so quickly found something else to do that didn't involve her.
Unable to hide her irritation, she confronted her husband when he came in the door. He couldn't understand why she was upset. He explained that the massage, wine, and dinner had made him more relaxed and sleepy that he wanted to be. He thought by shoveling the snow, he would wake himself up and be energized enough to pay attention to her.
How often do we make assumptions and pass judgment on the behavior of our family members and friends? Once again, I was reminded that we are not mind readers and it's important that we get clarification so that we understand the other person's point of view.
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12-11-06
Last autumn, I had an opportunity to take canoeing lessons in a class offered through the kinesiology department of the University of Wisconsin-Madison. University students taking the Adapted Physical Education class had a lab section requiring them to work with people with disabilities in the swimming pool, gym, or other adapted activity. Last year, the adapted activity was canoeing.
The students learned how to modify canoes to support the participants with disabilities. The students learned how to get us into and out of the canoes safely and how to get us back into the canoe should the canoe tip over. In our practice session (held in a swimming pool on-campus), they purposely tipped over the canoes so that they could practice rescuing us. It was a stress challenge to be flipped into the water, but I loved the whole experience! A videotape of the event recorded the dunking.
This past July, I went canoeing again—this time outside of class, on an actual lake with my husband Dave, our son Andrew, and Ronit, Andrew’s wife. It was a breathtakingly beautiful, picture perfect day—the water was as smooth as glass. We were all having a wonderful time when Dave and Ronit's canoe "kissed" our canoe and rocked it so hard that I tipped and fell over on my weak right side. I was still in the canoe, but my shoulder, arm, and head went into the water. No matter how hard I tried, I couldn't "right myself."
Unfortunately, we had not planned for or rehearsed how we would handle this emergency situation. Andrew, who was in the back of our canoe, tried to come forward to help me but the canoe got perilously close to tipping over. Andrew carefully backed up to his seat in the back of the canoe. Dave and my daughter-in-law, Ronit, were nearby, but not close enough to reach over and lend assistance.
Thankfully, Ronit jumped in the water, swimming to the side of the canoe where she was able to push my body upright. I will never get over the fact that my daughter-in-law was the one who jumped in and "saved my life." So much for my husband of 37 years and my son whom I labored to deliver!
Surprisingly, I wasn't freaked out by this harrowing experience. But if I go canoeing again, you can bet that my daughter-in-law will be going, too. THANKS, RONIT!
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12-10-06
A dead car battery! It happened to me twice last week. It was dark and dreary both days so each of my friends (who were driving the van) had turned on the headlights as we drove to our destination and then forgot to turn them off when we parked the car. When we returned, the van was dead. What an inconvenience in the middle of a busy day. However, we were able to jump start the car without any help and were back on the road in less than 10 minutes. I was so proud of us!
My husband Dave had purchased an emergency portable jump starter from the automotive department of a local store and showed me how it worked. (The hardest part was opening the hood on the van.)
Because I had paid attention to his instruction, I was able to explain to each of the drivers how the jump starter worked. Just attach the jumper cables that are connected to the portable charger and turn the key in the ignition. BINGO! The car starts. That's it!
Guess what I'm giving the kids this year for the holidays?
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12-05-06
Today I received an E-mail from one of my readers. It made my day, week, and year!!! I so appreciate it when readers take the time to write to me and say things like, "Your story is my story.” “Shelley's words made me feel less isolated and alone.” “You always seem to have a subject I need to read about.” “Thank you for all you do."
When someone has a chronic illness, it changes every aspect of that person’s life. Knowing that writing about my challenges and personal experiences is helping others has helped me heal and make sense of my own illness. I may not be able to cure my MS, but I can begin to heal, and in the process, find a partial/possible answer to the question, “Why Me?” I hope I help you, my readers, on your journey, and I also want you to know that your words have helped me! And to my friends in the computer world and the print and electronic media, I say, “Thank you for the honor and privilege of publishing my words."
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11-08-06
Sometimes I get tired of thinking of EVERYTHING. Today I had some unscheduled minor surgery in the doctor's office. It was on my back and I didn't think too much about it until the local anesthetic wore off. It annoyed me enough to think maybe I should have asked the doctor for some pain medication. I decided to call the doctor and ask her to prescribe a few pain pills for me just in case. I gave her the name, address, and phone number of the pharmacy.
An hour later, her nurse called to say that the prescription was called in. However, when my husband, Dave, stopped at the pharmacy on his way home from work, the pharmacy said they had no such prescription for me. Returning home, my husband was annoyed that there was no medication waiting for him.
By this time the doctor's office was closed, so I left a message for the doctor-on-call to call me. And then, I called the pharmacy to double check. Perhaps one of the pharmacy staff remembered taking the nurse's call. No one did.
I explained that I had given the nurse the pharmacy contact information and she had just called to confirm that the pain meds had been ordered. Was there any possibility my name had been spelled wrong, or filed in the wrong bin, or in the process of being filled? I was just about ready to hang up when the pharmacy tech said, "Wait! Maybe the nurse left a message on our machine." She put me on hold and went to check the answering machine. Guess what?
I admit that I get tired of dealing with everyone and everything that has to do with the medical community—and so does Dave. Maybe I'm just tired right now. Tomorrow is another day and now that Dave has gone back to the pharmacy to get my pain meds, I should sleep real well tonight.
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11-05-06
I just returned from my friend Rae's memorial service. She died on my 60th birthday after a long struggle with multiple sclerosis. At her service friends and family spoke of how she touched their lives. I was struck by the love, devotion, honesty, and humor that was shared. Everyone had stories to tell about how she fought without losing hope and how resilient she was in the face of ever mounting challenges.
A mutual friend had driven me to the service and when we returned to my home, I asked her to wait a minute while I used the restroom. I wheeled into the bathroom and transferred myself onto the commode. Unfortunately, I didn't get my slacks down far enough and created a little problem. I was already emotionally fragile. Now what?! I need help dressing; my husband helps me with that chore every morning and night. Now I would need someone to help me change.
I knew the friend who had taken me to the service, but not THAT well. How could I ask her to help me change my soiled clothing? And then I thought of Rae. She had endured more indignities, disappointments, frustrations, embarrassing moments than most people could ever imagine. And what had people said about her grace and dignity? Surely I could "buck up" and ask for help from our mutual friend. And so I did.
And do you now what the best part is? I'm not crying about the situation. I'm sitting here writing this blog entry as a testament to my friend Rae. While she was alive, she touched a lot of people. Perhaps by sharing this experience in light of Rae’s life, all of us can gain some inner strength and courage to face our own challenges. Thank you Rae for your example!
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10-15-06
A friend was having a crisis with her 5 year old business and she sought the input of professionals in the field. They advised her not to let her clients know of her problems. They were afraid she would appear weak and send the message that her business was in trouble.
My friend struggled with the experts' advice. It went against everything she believed about her clients and their loyalty.
I understood my friend's dilemma; I, too, have gone against "conventional" vision and followed my intuition and passion to build Meeting Life's Challenges, LLC. It's definitely not the easy way.
I feel a spirit within me that keeps me focused and determined to continue working hard to help people who are just like me—trying to put their lives back together after chronic illness and disabilities.
I've learned that asking for and receiving help from the people around me makes me stronger—NOT weaker. Listen to your intuition—it's our higher power/God whispering in our ears.
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10-14-06
She's not even two and my granddaughter, Jordan gets it. At some level, she understands that I need help and she's there to lend assistance. Here's how I know.
We were on vacation with both of our married children and their families. We were all staying in the same accessible house. Every morning, Jordan came into our bedroom while we were getting ready for the day. On this particular morning, my husband Dave was ready before I was and left the bedroom for the kitchen. As I interacted with Jordan and continued to "fix my face," I realized that I needed to use the commode.
I told Jordan, "Grandma needs Papa's help. Would you please go tell Papa, 'Grandma needs help'"? As fast as those two little legs could carry her, she bolted for the kitchen. I could hear her telling Dave, "Papa, help Gamma." When he didn't respond like she wanted him to, she kept repeating herself. Finally, I could hear Dave's footsteps, with Jordan's parents in the background laughing over their daughter's perseverance. Jordan was on a mission and took her task seriously.
During the week long vacation there were a number of other times Jordan helped "Gamma." As I write this I feel blessed to have one more angel in my life—and at only 21 months what a powerful, little angel she is!
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09-24-06
Each morning and each night, as my day begins and ends, I hear on the TV and read in the newspaper about the pain and suffering of people all around the world. For so many people, there is no peace, no tranquility, no hope for a better future.
Everyday, in random quiet, peaceful moments, I stop and reflect on how lucky I am and how many blessings I have. I give thanks sometimes at unique moments...like waiting in the car while a friend acts as my legs and runs into the post office for me; lying on the examining table in the doctor's office, or, watching my wonderful 32-year-old daughter sleep on the couch during a quick visit home.
My wish is that all people have the opportunity to “soak in” some quiet, peaceful moments, appreciating the gifts that they have been given. Then, perhaps, a greater more global peace could be achieved. Will that ever happen in my lifetime or in the lifetime of my children or my grandchildren's? I don't know. I know I can't heal the world. But I can find peace within myself and all around me.
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09-12-06
Most of the time, I love the work I'm doing—writing, speaking, learning and sharing how others are coping with the challenges of their chronic illness. Most days I can handle pressures of the deadlines, the stress of keeping up with the new technology, and of course, the responsibility of paying the bills. I think some people may interpret my attention to detail and involvement as "controlling."
I admit it. But some days I get tired of "being in charge."
If they only knew how much I would love to play a minor, supporting role—being a leader is highly overrated.
Sometimes I think walking is overrated, too. People think that my greatest wish would be that I could walk. But walking would give me extra responsibilities, too—like cleaning up after people, making sure everything runs smoothly and when it doesn't, fixing the problem.
I guess the moral of my blog today is: sometimes the grass looks greener on the other side—and sometimes it just leads to a big patch that needs lots of mowing!
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08-15-06
On a recent visit to a local home health store, I saw a standing frame in the corner and inquired about its use. (A standing frame is a piece of  durable medical equipment that helps someone stand. The machine's cushions, straps, and hardware are adjusted to safely hold me in an upright, standing position.)
Turned out it was a demonstration model for people with disabilities to try. In a matter of minutes, I had scheduled an in-home demonstration. I could try the standing frame out for a few days to see if I might want to buy one—a major portion of which would be paid for by my insurance company.
I know how important standing is for bone strength, circulation, and many other reasons. In the past 20 years, I hadn't been able to stand for more than ten seconds on my left leg. Standing on two feet, supported all around for more than 1 minute would be a new experience.
It took 2 trained people to get me into the machine and adjust all the supports. Then I stood eye-to-eye facing my helpers. I stood for 8 MINUTES! It was AMAZING. I could breathe better. I felt physically and emotionally strong; standing literally showed me a new whole perspective.
Isn't that what many of us need? To take chances, try something new, and give ourselves opportunities to see the world from a different angle. What a liberating and empowering day it was!
My goal is to stand for 30 minutes by the end of the week. I'll keep you posted on my progress.
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07-12-06
My friend Bobbie remarked to her daughter that she was going to try on her old bathing suits which were in her drawer since last summer. Her daughter reminded her that she wouldn't be able to wear them. Not following her daughter's meaning, Bobbie repeated that she would try on the old suits before she and her husband left on vacation. Her daughter finally had to remind Bobbie that she had had breast cancer surgery and she'd have to purchase another type of suit.
After relating this story to me, Bobbie and I gave each other knowing looks and laughed. I, too, often forgot about my chronic illness and (dis)abilities. I am known for forgetting to ask about wheelchair access even though I use a wheelchair.
I think our "mental lapses" are signs that we have moved beyond our "problems." We see ourselves as we have always seen ourselves – as whole and complete human beings.
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07-10-06
My girlfriend and I were discussing how family dynamics change when children marry. It's something neither one of us really thought about until it affected our lives.
On one hand, I was thrilled that my children had found ABSOLUTELY WONDERFUL mates. On the other, I selfishly and honestly had to fight against dredging up those past negative feelings of "I can't…" and "I won't be able to….” It resurrected questions from years earlier, like: How would my MS affect my children? How could I be part of their lives when there were so many things I couldn't do? How could I put on a happy face when family members went camping, biking, skiing, etc. without me?
When my children married, there were additional worries, like how would my son-in-law and daughter-in-law feel about accommodating my needs and limitations? They were new to the world of chronic illness and that was scary for me. Simple issues like helping the kids relocate, doing odd jobs when visiting, cooking food for their freezers, etc. things that I would have done had I been able-bodied made me sad all over again.
It's been almost 4 years since our daughter was married and 1 year for our son, and I think I'm getting the hang of this in-law stuff. My husband, Dave and I have learned how to be helpful, respectful, and ready to help in any way when we are asked. I've learned that family dynamics are always evolving as children grow and loved ones pass on. If we're lucky, everyone continues to work toward understanding, accepting, and including each other and that's just fine with me. I'm no longer sad or worried about our changing family dynamics.
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07-01-06
I'm putting together a scrapbook for my son for his 30th birthday. I have had a lot of people helping me, but yesterday I was alone while I was putting the finishing touches on the book.
I needed to crop some pictures. Although I have a paper cutter that I can use with one hand, the pictures weren't coming out perfectly square. In years past, I would have agonized over this problem—not finishing a project because it wasn't up to my self-imposed standards.
But now, today, I am able to look at the slightly off photos and honestly say, "IT'S FINE! My son will love this book, even with its imperfections. This book will forever be a reminder of his wonderful life."
I also think that, as remarkable a man that my son is, he will forever know, how proud I am of him and how much love was put into the project—ragged pictures and all.
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06-27-06
What a special day! The National Multiple Sclerosis Society had a fundraising luncheon last week in Madison, Wisconsin, where I live. Teri Garr,  the movie star and TV actress, who has MS, was the guest speaker. The event was held in the glass enclosed, sun-filled lobby of our brand new, $200 million Overture Center for the Arts. Everyone was dressed up for the event and the beautifully set tables with bright red tablecloths and white rose centerpieces in glossy black dishes made everything picture PERFECT.
We were guests at an elegant affair—a sharp contrast to the doctor's appointments, therapy sessions, and efforts we go through on a daily basis to manage living with an incurable, debilitating chronic illness like multiple sclerosis. No one noticed the wheelchairs, walkers, canes, or oxygen canisters that were in the room. We were not about to let anything spoil this grand afternoon!
As beautiful and as festive as the location was, the best part of the entire event was having Teri Garr there. She made the event! Personally, she is every bit as beautiful, funny, delightful, and entertaining as she is in the movies and on TV. Her presence and her powerful stories brought an honesty about the struggles and challenges of living with MS. She also stressed the importance of getting on disease modifying drugs, (none of which were available when I was diagnosed 27 years ago), supporting medical research, and most importantly, having hope.
My fantasy for the last 27 years has been of turning on the national news one night to hear the lead story be—"Breakthrough in MS—A Cure is Found!" Hearing the words today of Colleen Kalt (CEO & President of the National MS Society-WI Chapter), and Teri Garr, I know that the money we raised for the event today WILL one day make my fantasy a reality.
Meeting Teri Garr
Because I was on the luncheon committee, I was included in the VIP reception during which the sponsors and big givers could meet Teri in a more intimate setting. As I waited in line to thank her for making me laugh over the years and for raising awareness of MS by sharing her story, I watched her interact with the people who surrounded her. She was lovely, gracious, sincere, and appreciative.
When it was my turn to speak with her personally, I felt an immediate kinship. She had also lost the use of her dominant right hand and right leg. She wore an ankle foot orthotic (AFO) on her right foot for foot drop like I did when I was still walking. She inspected my Amigo 3-wheeled scooter, and said she had the exact same model that I had. She bought it because it was so lightweight. She still, however, had trouble getting it in and out of the trunk by herself. Even though Amigo sells a trunk lift to make it easy to lift the scooter in and out of the car, I told Teri my solution: When I had that problem, I looked around the parking lot for the cutest guy, and asked him for help. It put a smile on her face and it felt good. Thank you Teri Garr for all the times you put a smile on my face!
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06-25-06
Recently, I was reminded of some awkward situations where I've felt "I ruined a party" (my own or someone else's.) I've collapsed in my wheelchair and had to be lowered to the floor in the middle of a friend's cocktail party. I've been carried out in my husband's arms at a bridge game get together and disrupted everyone's evening. And, I've excused myself from a dinner party in my home to lie down (never to return) while my husband entertained our guests.
I felt guilty and embarrassed. Should I apologize? Or, should I just ignore these uncomfortable situations, when they're over they're over? This is what I've learned: These things happen and I don't think there is a need to apologize. When I have felt up to it, I wrote a note or called. In some situations, I shared additional information like—I had a bad reaction to some medication I was taking. I ate something that didn't agree with me. I must have picked up a bug and my immune system overreacted.
My friends were concerned and appreciated knowing that I was OK. They were sad to see me laid low by my chronic illness and just wanted to know that now I was feeling better.
I feel that when I explain what happened, my friends appreciated my honesty. They send their prayers and positive thoughts my way, and they don't have to be afraid to reach out and call me.
For those times when I didn't have the energy or didn't want to retell the details over and over, I asked one of my close friends to call and talk to the others.
Whatever way people choose to handle awkward situations, the important thing is to NOT let the incident be an excuse to pull back and isolate yourself from your friends and support network
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06-22-06
Last night was one of those nights when I tossed and turned and was more tired when I woke up than when I went to sleep. I had the dreaded "Harvard Dream." It's final exam time and I haven't read the books. I don't know where the classes or the exams are being held. When I try to drop the classes at the registrar's office, I am a day too late. The failed exams will go down in my record as "Fs."
I always have this same dream whenever I have been putting off something that needs doing. This time it was a presentation I was preparing for a client.
Call it procrastination, fear of failure, or, in my case, fear of disappointing people, I think there are times when everyone avoids things they need to get done.
The only way I can rid myself of the dream (and the added stress I'm putting myself under) is to face the challenge and DO IT. Generally, the "doing" is not as difficult as my mind was making it out to be. And once I complete the task, I release the stress toxins in my body and sleep peacefully. – Until the next time!
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06-18-06
For nearly two years, due to a weakened right side, I've been having a lot of trouble being comfortable in my Amigo wheelchair scooter. My Health Maintenance Organization (HMO) and Amigo International, the company that makes my three-wheeled scooter, have been trying to help solve the problem. But it's more difficult and complicated than anyone realized. We've tried all kinds of chairs, seat cushions, and supports. We've experimented with gels, foam, and air. So far, nothing's worked. My scoliosis from sitting improperly is getting worse. The result is that I am not sitting up straight, making it more difficult to breathe and causing me to tire more easily.
But I'm not giving up! Now we're going to try a "brace." Perhaps this will give me the support I need to sit upright. I've had two fittings already and laugh whenever I think about the contraption I am going to wear. The brace or corset reminds me of what Scarlett O'Hara wore in Gone with the Wind. The scene that keeps playing over and over in my mind is when Scarlett is hanging on to one of the posts on her poster bed while her maid tries to pull the corset as tight as possible. What tortures women went through in the 1850s!
As long as I'm going to take my own trip down memory lane, I think I'm entitled to a special request. Could they make the corset in red satin with frilly red garters? I think it would be hard to keep from laughing each morning as I lay on the bed while my husband "laces me up." We've certainly not experienced anything like THIS in our 37 years of marriage. Clark Gable: eat your heart out!
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06-15-06
I recently learned about a ten-year Australian study that confirms something I've believed for many years; family is not enough. Relationships with friends make our lives happier and better. Don't get me wrong. I have a wonderful, supportive, and loving family. I don't know what I do without them. However, I still need my friends -DESPERATELY!
In my case, friends fill in the pieces. I think that's why I have friends who fulfill different needs. One group of friends may not even know another. Some are friends from childhood, my teaching days, my volunteer days, my old neighborhood, my new neighborhood, my temple, and more.
Friends bring new energy to my life. They listen and react as outside observers. They teach me things I couldn't learn anywhere else. They have interests and talents that stretch my thinking. They help me to get outside myself and to see a broader world. They see a different side of me and their friendship tells me that they accept me for who and what I am. They make me feel happy and valued.
I know they say that blood is thicker than water. But I also know that humans cannot live without water. I hope I always have a good measure of "blood and water" in my life.
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06-08-06
This weekend we're off to see our granddaughter (Oh yeah, and her parents.) She's almost 17 months and is developing right on target. It's so much fun watching her discover the world and learn new things. Her parents took a "baby sign language" class to learn some basic signs and have been using them, along with talking, to communicate with their daughter. (Signs represent concepts and words like: more, all done, Mommy, Daddy, Grandma, Grandpa, milk, water, please, thank you, play, dog, bird, cracker, bathroom, and more.) I think it has increased my granddaughter's ability to communicate, express her wants and needs, and reduce frustration.
Using signs with infants and toddlers is definitely a positive change from when we raised children. I wished I had thought of using signs when our kids were little. After all, I was a teacher of the Deaf and used it everyday with my students. Yet, I never really thought of using it to help my children communicate before they developed the language and articulation to express themselves. Talk about missing the boat... How many times have I looked back to when I was a young parent and thought, "Oh, if I had only done (or not done) this or that?"
Frankly, I'm glad that I can sit back and watch this new generation do "their best" in the parenting department. And, I'm happy to play a supporting role as a kind of "sign language dictionary."
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05/19/06
This afternoon I called a colleague at her workplace about sponsoring a table at a fundraiser for the National Multiple Sclerosis Society. As we talked, I could hear her typing on the computer, perhaps taking notes on what I was saying, perhaps she was multi-tasking and answering email as we spoke. Later in the day, a friend called to say hello, in the background I could hear lots of activity. She was unpacking the groceries. And then there's my husband, watching the TV on split screen, reading the newspaper while listening to the baseball game through his radio headphones.
Is it the sign of the times, this rushing, hurrying, doing 3, 4, 5 things at once? What's happened to just talking on the phone, unpacking the groceries, or, sitting down to just read a newspaper? I don't know about other people living with chronic illnesses, but I have trouble doing ONE THING at a time. I will continue doing ONLY one thing at a time and enjoying every minute of my life in the slow lane.
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05-17-06
My husband Dave is home from work—sick for a second day. He rarely gets sick and when he does take a sick day, he usually defrosts the freezer or washes the car, no matter how bad he feels. This time it's different. He is lying in bed watching TV with his box of tissues and wastebasket close at hand. It is a MOST unusual sight. Last night at 3 a.m., I finally kicked him out of the bedroom so one of us could get some sleep. (I felt a little mean doing so, but I knew if I got sick, he'd have two people to take care of.)
As I try to be helpful by bringing the newspaper to him and turning the lights on and off, I realize how much I depend on him and how, even when he's sick, he still has to help prepare the food we eat, help me dress and undress, and help me in the bathroom. I'm sorry that I can't do more and try to be understanding when his temper and attitude reflect how icky he feels. I'm very grateful that in a day or two or three, he'll be back to his old self and life will return to normal.
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05-03-06
There was a time when I couldn't look to a hopeful future. One day at a time was the best I could do. Some days living from morning till noon was a heroic feat. Then, when noon came, I'd tell myself that I can live until dinner. Sometimes, when we let our minds enter that dark tunnel of defeat and hopelessness, we are our own worst enemy.
I know it can be extremely hard to shut off the (loud) negative voices that try to take over when chronic illness NEVER LET'S you forget its presence. I just try to keep the volume turned up on the positive, healing messages that I let into my mind.
When I can't quiet the demons no matter how hard I try, and Pandora's box of worries threatens to consume me, I talk to my doctor about how I'm feeling. He has recommended that I talk to a therapist who helped me deal with my feelings. I've also been taking an antidepressant for more than 20 years. Between taking the medication and learning coping strategies from a therapist, I've had an easier time keeping the scary, dark, ominous, and unproductive thoughts at bay.
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04-21-06
We woke up this morning to the sound of pouring rain and claps of thunder. David and I lay there talking quietly about how wonderful it was to listen to the sound and fury of an April storm from the comfort of our warm, cozy bed.
How lucky we are to have the house to ourselves with our two married children living their own lives and out on their own (with a health plan and 401K) How lucky we are that it was Sunday and we had no appointments, deadlines, work, or traffic to deal with. We could just BE.
While getting dressed, I listened to the radio. Then I moseyed into the kitchen for coffee and to read the paper. I automatically turned on the Sunday morning news show. As I, listened talk of the war in Iraq began to register in my mind, I realized that I'd only been up a few minutes and already I had been jolted back to reality by the radio, newspaper and TV.
I had to work hard to keep that relaxed, grateful, and blissful feeling I'd had when I first woke up.
There is so much pain and suffering in the world. If I took in only the harsh realities of this life and didn't balance it with moments of joy and love, it would be impossible for me to ever get out of bed.
Yes, it's often difficult to keep looking for and seeking out brief moments of gratitude and appreciation. But when I do, I temporarily create a more balanced world for me, and balance is important in this crazy world of ours.
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04-02-06
Last night, we had plans to go out to dinner and to the symphony with some old friends.
To make sure that I would have energy for the evening's activities, that afternoon, I got out of my scooter and got into bed, planning on reading or watching a little TV. Some glorious three hours later, I woke up! I really conked out, only vaguely remembering that the phone rang.
Between the wonderful dinner with good friends and the magnificent Mozart concert, I forgot that I had multiple sclerosis. And, when you add in my three hours of delightful afternoon nap, you could say that I was able to escape from the world of chronic illness for nearly eight hours! It certainly felt good!
It's very important for all of us who live with chronic illnesses to find ways where we can escape, even if it's only for a few hours. Whether it's a nap, a good book, a visit with old friends, music, or a movie, all can provide a brief respite from the realities and challenges we face every day.
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03-24-06
I love going to my Friday morning swimming class on the campus of the University of Wisconsin-Madison. University students who are taking a class called Adaptive Physical Education have a lab requirement—a swimming lab where they help people with disabilities, like me, in the dressing room and in the water.
Today, while helping me dress, one of the students asked me if I went swimming at the other times during the week because I seemed to love the water so much. The words that flew out of my mouth surprised even me.
"I love everything I do. I love my swimming classes. I love being in the water. But I also love being with my family and friends, the work I do writing, and speaking to people living with chronic illness. I love everything I do!!!"
I think the students who heard my reply were surprised or at least that's what the expressions on their faces told me. So I added, "I try to fill my life with things I love to do and I hope you ALWAYS give yourself permission to do the same."
(It has only taken me 59 years to understand the importance of this concept. I hope the students learn that lesson a lot earlier than I did.)
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03-18-06
Last night after he finished work, my husband Dave picked me up and we drove to a local bar to meet some people Dave used to work with. Over the past 30 plus years, this group has gotten together for various reasons. This time it was St. Patrick's Day.
The women sat at one end of the table, while the men sat at the other. Having known each other for many years, the women immediately started sharing family updates and pictures of children and grandchildren. And then the conversation took on a more serious tone. One woman told us that her sister was terminally ill. Another said that her daughter had not totally recovered from a traumatic brain injury as a result of a car accident and still required a lot of help from Mom. A third explained how, as a registered nurse, she was doing palliative care (helping people with incurable diseases.)
I looked over at the men at the opposite end of the table. They were laughing, joking, and reminiscing. They talked about sports, March Madness, retirement. As the cans of Guinness beer began to accumulate on the table, their conversation and energies turned to building a tower of cans. As each attempt failed, they got sillier and sillier. Others sitting near us began looking over at these grown men were making quite a spectacle of themselves.
All of us wives began laughing too and offering our engineering expertise to the effort. It really was funny. One of the wives even got involved. She wanted to show the men how it was done. All to no avail.
As David and I walked to the car at the end of the evening, we laughed at how fun and silly the evening was. It was then that I realized what a relief it had been, even for just a few minutes, to laugh and giggle and be childish. Life is a serious matter; all of us are old enough to understand that all too well. Having fun and being silly with old friends was powerfully GOOD MEDICINE.
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03-17-06
As I look outside at the melting snow, I think of yesterday. It began snowing at 7:00am and according to the weather forecasters it was not supposed to stop until 8 inches were on the ground. Thankfully, Debbie, who works in my office on marketing and development, called to say that she would still be in. A home-grown Wisconsin girl, she wasn't intimidated by "a little snow."
Bless her heart. If she didn't come, I would have had to stay in bed. It's the only place where I can be safe when someone isn't in the house with me.
I don't like to use the word HATE because "hating" is a waste of my valuable energy. But that's the only word I have to describe how much I dislike having to stay in bed. So thanks to Debbie, I was able to stay up, spend time in my home office, and connect with people who are living with chronic illnesses like I am. Doing that fills me up and increases my energy. I feel like I'm doing something for somebody else and that feels very, very good. So thank you, Debbie, for being who you are, for following through with your commitment to be here, and for all the energy and support you bring to your work.
It's so important to say "thank you" to people who help us get through each day.
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03-09-06
Public buildings are becoming more accessible because of the Americans with Disabilities Act. However, there is still much work to be done and sometimes WE have to help. My friend, Jan, recently told me about a friend of hers who was trying to get the new senior center in her community to create a large accessible bathroom. Jan's friend was not having much luck.
It reminded me of something I did many years ago when they were expanding our airport. I attended an Airport Commission meeting. In attendance were men in business suits. (There was only one woman.) Sitting in my scooter, I had to address the group and share the fact that I needed help from my husband in the restroom. Using an accessible stall in the woman's room was not an acceptable solution. We needed an accessible restroom where he could help me.
The newly remodeled airport did have a large, unisex bathroom—but the door was always kept locked. Why? They didn't want vagrants sleeping in it. If someone wanted to use the restroom, he/she had to call security and wait until someone came to unlock the door. I was not happy about this.
So, I called the man who was the county administrator of the airport and talked to him. Since that time, the bathroom door has remained unlocked.
I'm happy to report that they just added on a new addition to the airport with "family" restrooms in the main terminal as well as through security on the concourses. (I didn't have anything to do with this.)
Things can only change if we speak up.
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03-02-06
Yesterday, I was feeling a little blue and turned on Barbra Streisand's Higher Power CD. The tears began to flow. I cried quietly at first, listening to "You'll Never Walk Alone." I don't know why those words took me back to that time when my life was filled with worries and doubts about my future - when I felt like I was dying, when the future was black and bleak. Listening to that music triggered a return to that dark place filled with nothing but "aloneness."
I let the tears flow. After some time, I felt the darkness began to lighten and the tears began to subside. I breathed easily and began to relax. Sometimes I just need to cry. I don't always need a reason. For me, crying is an emotional release. It's also a safe way for me to get out the dark and torturous thoughts that come from living with the stress of chronic illness. Once I've had my "therapeutic cry," I feel I can continue to "fight the good fight."
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02-27-06
Today is our last day on the cruise and I'm ready to go back to reality. However, I wouldn't have minded another day or two on the ship. The weather today is the worst we've ever experienced aboard a ship. It is about 55, rainy, foggy, windy, and the sea is rolling with white caps. It's too cool to sit outside.
Dave was awakened by the movement of the ship and took a Dramamine the minute he got out of bed. Mom drank only tea for breakfast. I hopped out of bed and went to the first of two morning computer classes. For me, it's best to keep my mind busy. I find that when I get my head into a different place – (in this case, focusing and concentrating on what the teacher was saying) – I totally forget that the seas are turbulent and the ship is "a-rockin'." And, the best part is that not only did I forget about the choppy seas, but I learned how to fix my vacation photographs; getting out "red eye," opening closed eyes, removing unsightly telephone poles, and using the "clone tool."
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02-21-06
It was turning out to be a wonderful vacation and we were enjoying ourselves on the cruise ship very much. Then Dave woke up one morning and hopped out of bed. As I watched him walk to the bathroom, I couldn't help but notice a big brown spot on the back of his pajamas. "Oh my gosh! What happened?" I shrieked. "What's on the back of your pajamas?"
With a "what are you talking about" look on his face, he turned his head to look where I was pointing. Then, he saw it and looked up at me in disbelief. We both inhaled deeply, thinking, there should be a smell. He quickly pulled back the covers of our bed to see if this brown mess was also in the bed.
As I looked over to his side of the bed, I could see something shining and pointed it out to David. As he reached over, it dawned on me! That little piece of chocolate that our steward put on David's pillow last night, had migrated to the middle of the bed. The warmth of David's body, his movement during the night, had squished the chocolate onto the seat of his pajamas.
Once again, I am reminded that things are never as they seem.
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02-03-06
"What beautiful nails you have!" one of the women at the beauty shop remarked. For years, I have wanted beautiful nails but they always chipped and cracked and my picking at them didn't help either. So, I looked at my beautiful nails and smiled. This is a perfect example of: "Be careful what you wish for." Yes, I got what I wished for but in reality, I would trade my beautiful nails instantly for two hands that worked. Another lesson learned from MS.
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02-01-06
Today I really had a hard time waking up and getting my mind in gear. I would have loved to stay in bed a little longer. However, in my life, there's not a lot of room for spontaneity or choice. On weekdays for example, I pretty much have to get up by 7:15 a.m. so my husband can help me get dressed. I don't feel comfortable having other people help me with that task. Besides, it's exhausting explaining how to help me to someone who is not familiar with my needs or routine.
Once I was up this morning, I sat bleary-eyed looking at myself in the bathroom mirror. What a sight! I had to laugh. This was a face even a mother would have trouble loving.
Like an automaton, I went through the motions of my daily rituals. I brushed my teeth, washed my face, and began putting on my makeup. The makeup foundation gave me a little color. The eye shadow, eyeliner, and mascara gave me a wide-awake look. Filling in my eyebrows and applying lipstick finished off my face. A little hair fluffing and I looked like a person again. The funny thing is I also felt better, more wide awake, and ready for the day to begin.
Sometimes we don't feel like getting out of bed in the morning, literally and figuratively. But I believe that going through the motions and plowing forward will help you back in gear, (even when you're not really sure you want to.)
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01-30-06
We just returned from a visit to see my son and daughter-in-law in their first house. Their three-bedroom ranch, in a quiet neighborhood was adorable. The ramp my son and his wife built was like a beautiful red carpet welcoming me to their home.
I think one of the things that tickled us the most was the pride our son took in his home. As a child, he was very relaxed and blasé about his surroundings and his belongings. He'd forget where things were or lose them altogether. We always seemed to be looking after him.
But all of that childish behavior was gone. Now at 30, it was clear that he had grown into a hard-working, responsible, organized, competent, loving, and caring adult. And the best part of it all is that I lived to see it!
It was a great reminder to me that all those self-doubts and worries I had about my parenting skills should not have been concerns at all. Kids do have to go through all those developmental phases as they work their way toward adulthood. I'm smiling right now just remembering our visit. My grown son, his beautiful wife, their new home; I can rest now. He is on his own.
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01-18-06
Over the weekend, we had a visit from my husband's 3 best friends from high school and their wives. All of them stayed with us in our home, which felt more like a dormitory. It was great fun because I've known these men and women as long as I've known my husband, more than 38 years. We have a long history and they remember me before my diagnosis.
I was curious to find out what they remembered about those early years before my disability became so limiting. Did their children have questions? What did they tell them? How did they feel when we came to visit and I couldn't be as helpful as I used to be? How did they feel when activities were more restrictive because of my needs? What where their worries? Did they talk among themselves about our situation?
So on Saturday night, I asked them if they would mind if I asked them some questions and taped their answers. They agreed.
I appreciated their honesty and candor. Yes, it was hard for them to watch the progression of the disease. Yes, it was difficult seeing how much help I needed from my husband, David. Yes, they talked about the responsibilities that rested on their friend.
I was happy to learn that they never thought of not including us in reunions, parties, or celebrations because it required more planning on their part. I was happy that they teased Dave and me just like they used to. And, I was happy to learn that one family, feels I have a special relationship with their daughters because I always had the time to talk, listen, and pay attention to them when all the other adults were busy "doing stuff."
Dave and I enjoyed having all of his buddies together at our house for the first time and I know the other couples enjoyed the weekend as well. But I had the greatest time because I learned that David's relationship with his friends hasn't suffered because of my MS. In fact, it may have even enriched our friendships and given us more reason to be grateful for having each other. It was very healing weekend for me in more ways that one.
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01-04-06
A week ago, I sent out my annual "winter letter" and ever since I've been hearing from my out-of-town friends and relatives. Several people called or sent me an e-mail. All thanked me for writing and making the effort to stay in touch.
Every year I struggle to write that darn letter because of the bad name mass-produced holiday letters have gotten. When I started writing the letters 26 years ago, I did so after I was diagnosed with multiple sclerosis (MS). Living in Madison, Wisconsin, many of our friends were people we met while attending the University of Wisconsin. After graduation, most people moved and that's why we had so many friends living all over the country. A mass-produced letter was the only way I could manage to tell them about my diagnosis. It was just too overwhelming to write individual letters.
Every year since then, I've written a yearly Schwarz family update. In the letters I've shared the highs and lows of our family's journey. Today, as I reread those letters, I am reminded of how far we have all come.
Letter writing is a wonderful way to chronicle one's life. Whether you write the letter for "public consumption" or yourself, it has the potential to show you how strong you are, how resilient you can be, and how much you've grown.
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01-03-06
We spent New Year's Eve babysitting for our 1 year-old granddaughter Jordan while her parents went out for dinner with friends. It was a quiet night of reflection for me: how fast the time goes, how each year brings us blessings and difficulties; and how each day we must resolve to begin anew to look for reasons to be hopeful.
For many of us, medical science hasn't found a cure for our illnesses, YET. I know someday they will. It may be in our lifetimes or maybe not. I don't know what the future will bring, but I do know that while I wait for that cure, that break-through, that answer to my prayers, I will be hopeful, optimistic, and positive. Why? Because I've got a little miracle sleeping down the hall and I don't want to miss a minute of her life. It's a New Year with new beginnings and more opportunities for miracles. Look around you and you'll see them everywhere. Cherish them. Hold them close. Enjoy their presence. We are blessed in so many ways. Life is not perfect. I am deeply thankful for all I have.
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12-21-05
The other day, Nancy, a friend, called to ask me if I would talk to a friend of hers from graduate school. This friend had been diagnosed with a very rare medical condition and was losing hope that her pain and serious physical limitations were ever going to improve.
Not a week goes by that I don't hear from someone with this type of request. I'm flattered that people think I can offer hope and encouragement to their friends and acquaintances.
I told Nancy what I tell others who call me with the same request: "I'm happy to talk with their friend—if the friend contacts me first."
The reason I want people to contact me is that there are so many emotions connected with coping with life after chronic illness. People have to be at a place where they are ready to talk about the scary thoughts, anger, and frustration. They have to be willing to reach out and ask for help. If they can't, no amount of talking is going to get them to move toward acceptance.
What Nancy and the others who contact me need to know is that people deal with their chronic illnesses in their own way and on their own timetable. Nobody can predict or set a date by which someone must move forward.
So, will Nancy's friend call me? I don't know. But if she does, I'll let you know what I say to her. Stay tuned.
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12-12-05
Over the last few days, I've been telling people about my new blog and the feedback has been interesting, although not totally surprising.
After reading about my recent "bathroom" problem, several people shared intimate details of their own experiences. Even though many were friends of longstanding (i.e. old), I learned information about them that I never knew before. My friends wanted me to know that they really understood my thoughts and feelings.
I guess it didn't surprise me because over the years, my family members have teased me that whenever people talk to me, they often tell me intimate and personal details of their lives. The plumber, electrician, car wash guy, sales clerk, you name it—I have the DETAILS.
For years I wondered why this was so. I figured that when people saw me sitting in my 3-wheeled Amigo scooter, they would know that something bad had happened to me. (Why else would I be in a scooter?)
Maybe strangers were reaching out to me as a way of sharing my pain, hoping that somehow by talking about their challenges and difficulties I would feel as though I was not alone. Or, maybe they just need to talk with someone about the bad things that had happen—like the guy who came in to repair the carpet and told me he had just been diagnosed with metastasized stomach cancer.
I've come to understand that sometimes it's just comforting to share your story with someone who has also been facing life's challenges. Yes, bad things do happen to nice people—all the time. We can't change each other's lives, but maybe by listening we can validate and understand how difficult life can be.
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12-03-05
When I started writing this blog a week ago, I wanted to have a forum to share "what it's really like to live in the world of chronic illness." I wanted to give voice to the challenges, lessons, and realities of coping with chronic illness. I wanted to reflect honestly the good, the bad, and the ugly in an honest and sincere manner. Today was the ugly; so if I'm true to my word, I have to write about it.
This morning David, my husband, left the house for the day to attend a work-related funeral and then to go directly to a UW-Wisconsin basketball game. As I always do when I'm alone in the house on weekends, I called my neighbors, just to make sure at least one person was home just in case I needed help.
Fifteen minutes after David left, I needed to use the restroom. It happened so fast that I didn't make it. I was in a BIG mess in more ways than one. My first reaction would have been to call David on his cell phone, but unfortunately he left it at work so there was no way to reach him once he left the house.
I felt that this was too intimate a problem for one of my neighbors to help me with. What was I going to do? Dave would not be home for at least five to six hours.
Who could I call in this situation? Immediately, I knew who I would call, my good friend Eve! (My really, really good friend Eve.) A former occupational therapist, Eve is one of those people for whom nothing is a big deal. She embodies the word "nurturer;" she is "a soft place to fall" and is always ready to help in times of crisis.
Eve was out running errands when I reached her on her cell phone; she would be right over. After everything was cleaned up, we chatted a minute. Then Eve gave me a long and loving hug and was on her way.
I went into my office and tried to put the whole incident out of my mind. But as you can imagine, it was not easy to do. Chronic illnesses, like my MS, certainly wreaks havoc with our self-esteem, level of independence, and ability to lead a "normal" life.
It was hard to get my mind off of what just happened. So I did what I always do in situations like this (and there have been plenty of these over the last 26 years), I turned on beautiful music and cranked up the volume. Barbra Streisand's Higher Ground CD; her song, "Lessons to Be Learned," was perfect for this situation. Playing in the background, it put my head in a different space and triggered the release valve. The tears began to fall, and fall, and fall.
Could I write about this private experience in my blog? Strangers would be reading personal and intimate details of my life. Is that what I wanted?
If I wanted this blog to be an accurate reflection of life with chronic illness, I had to write about all of it - the good, the bad, and the ugly.
Yes, I had to write about this incident because living with a chronic illness is extremely difficult no matter how good your attitude and your resolve. There are lots of times when our lives are downright frustrating and maddening.
But for me, I don't want to live my life walking down a dark, unhappy, and lonely path. So I reach out to friends, (really good friends), listen to music that touches my heart, have a good long cry, wipe my tears, and get back to LIVING. That's what I meant in my first blog on 11-28-05, when I wrote: I hope this blog will be a part of your healing because I want you to know that writing this blog is an important part of my healing.
Thanks, Shelley, for including one of
our adventures in your blog. What your
readers need to know is how often YOU
have helped me see my way through
difficult times. Perhaps I have been
able to help you during our weekly
visits in little ways, but you have
always helped me, by your good
listening skills and empathy, to take
the strain out of whatever emotional
issues I've dealt with in the decades
we've been friends. Often, you are the
giver and I'm the receiver. It's a
wonderful friendship because we each
bring our troubles and happiness to
share.
And for those of you who've only met
Shelley through her website, an
anecdote: One of our mutual friends
asked me years ago what I thought
of "Shelley's being disabled" - and I
really had to struggle to think of
what disability Shelley has! I forget
her motorized scooter, I forget her
inability to stand independently, I
forget that she struggles with so many
physical actions because what is
foremost are her abilities to continue
to be herself, to help others, to set
good examples and be productive and
almost always in a positive frame of
mind.
Wow! That's what each of us hopes to
be!
I wish the same for everyone.
Best wishes always - Eve
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12-1-05
| Today, Jamie sent me pictures from Thanksgiving weekend. The pictures of Jordan sitting on a bed sheet
attached to the back of my three-wheeled Amigo scooter with rubber bands made me smile all day. It doesn't take a lot to make me
smile these days. Those worries about what kind of grandmother I was going to be have all but disappeared. I'm going to do just
fine. In fact, I'm going to be better than fine. I'm going to be a cool grandmother!!! I can't wait until the day I become her
"Show and Tell" at school. |
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11-28-05
Jamie, my daughter, and David, my son-in-law, were here for Thanksgiving weekend with Jordan, their 10½ month old daughter. It was wonderful just watching that happy, little, 17-pound cutie crawl
 all over, pulling herself up on furniture, and walking around and around the coffee table. Already she has more physical abilities and stamina than I do.
Before Jordan was born, I worried about the role my daughter and her husband would let me play when they had children because of my severe limitations as a result of multiple sclerosis (MS.) Would they stand ever watchful, holding their breath until they scooped the child out of my arms into the safety of theirs? Would my grandchild be scared of me or my three wheeled Amigo scooter? Would having a grandchild send me into a depression because, once again, I couldn't be the grandma I wanted to be?
I needn't have worried about my place in Jordan's life.
Jordan was whisked off to the intensive nursery immediately after her birth. It was just a precaution, but exceptionally anxiety-producing, as you can imagine. From the moment, I walked into the intensive care nursery and saw the look on my daughter's face, my worries disappeared. Jamie matter-of factly took a pillow and wedged it between me and the scooter tiller. Then she carefully placed her tiny bundle on top of the pillow so as not to disturb the monitors and tubes attached to her daughter. Once Jordan was in place, Jamie turned her back to answer a nurse's question and didn't turn back to me for a minute or two. It spoke VOLUMES! I glowed inside and out from that holy experience.
Fast forward a few months. I started giving Jordan scooter rides, sitting on my lap, when she was about 5 months old. She sat perfectly still even though at times I could feel her slipping and had to ask someone to re-position her for me. (With only minimal use of my left arm and hand, it was impossible to adjust Jordan myself.)
However, this weekend was a first. After I gently let Jordan down to the floor after one of the rides, she turned around, grabbed my pant leg, and pulled herself up grunting as if to say "more" or "another ride."'
Yes, there are things I can't do and probably will never be able to do because of my MS. But the worries I had about my role in Jordan's life have all but disappeared. She doesn't care that I need help nor does she care that she can do more physically than I can. What she does know, even at 10 ½ months, is that my face lights up when she enters the room, that she has an ever-ready audience when everyone else is busy doing things, and she not only has a soft place in my heart filled with love, but also a soft spot in my lap to sit whenever she wants it.
Your grandma blog left me in tears. I,
too, feel sad that I can't be the
grandmother I want to be with my fifth
grandchild. No more baby-sitting, or
pushing the stroller or............
just talking about this today. We can
be the best with our love, smiles and
voices........
- Nan
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11-21-05
A friend suggested I start a blog so that I could share my thoughts and upbeat philosophy about living with a chronic illness, in my case, multiple sclerosis (MS). I wasn't sure what form this blog should take. So I looked to Oprah who has been a role model to me and so many other people. Her "What I know For Sure" column in O magazine always speaks to my heart and soul - like a prayer. I thought, if I could do that for my "brothers and sisters" living with chronic illness and disability, I would be using my life to make a difference. So, today I launch my blog, "What I've Learned About LIVING from My Chronic Illness."
I've lived with MS for 26 years and as you know, when you have a chronic problem, it is ALWAYS there to disrupt your life. It rears its ugly head without warning just to remind you who's in control. In this blog, I will share the lessons and philosophy that have made me the person I am today. Because even with all the MS imposed limitations, I lead a full and happy life.
I hope this blog will be a part of your healing because I want you to know that writing this blog is an important part of my healing.
So until, my next entry, ALL THE BEST!
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