“Come on board little children, come on board little children, come on board little children…” Wait! If you’re reading this and obviously alive then you’re already onboard your own train of life.
Life is full of variables and constants and one of those constants is change. Each day you and I change. We have skin cells die as new ones are born, hair follicles fall as new ones take their place and all of life within our bodies ages, as it is designed to do. We humans seem to rail against change more than any other species alive. We put great value on youth, perfection and beauty; however the poets tell us that beauty is in the eye of the beholder. We’re also told beauty is skin deep; some days I feel ugly all the way to the bone. For many of us who live with chronic illness which is often accompanied by chronic pain, we embraced a different concept of beauty long ago. We watch as our friends fret over one tiny wrinkle, two or more gray hairs and silently wish we had something that mundane to worry about. I don’t think that’s a judgment but it is a difference in priority for us. We would turn completely gray if it meant one day without pain. We would wrinkle like a linen hankie for one small measure of health.
The train of change is moving and we’re each of us, onboard. As we hear the clickety clack of the wheels on the rails, our lives are moving and changing. Change is a common denominator for all of us but for some of us, we face it more often than others.
This has been the story of my life with chronic illness and this year stands out as the greatest year or journey of change I have yet to experience. When changes take place in our bodies, they are often accompanied by changes in lifestyle. Just ask any of the thousands of brave war heroes who came home disfigured, maimed or missing at least one appendage. Daily life can also become disfigured as we take on new challenges, changes or alterations in what we can do, just for starters. Other changes we face are the disfigurements in our bodies and our own as well as others reactions to those changes. Changes in self-image can be very difficult to work through.
When one first becomes ill with a disease that is obviously going to become a permanent part of life, one’s head is practically spinning in circles. There is so much to consider such as jobs, marriages, income and the everyday business of surviving. We quickly become experts in what we are facing or we will crash or fall off the train. We can’t get off the train but we can learn how to survive and eventually enjoy the journey. I know, enjoy is a pretty strong word for many who are stuck in bitterness and regret, but eventually, most of us come to the realization that life must have some joy or it is wasted.
Life is still spectacular. It just might not be spectacular in the way each of us had planned for it to be. Change rears its head, the train we’re on heads down a sidetrack and there we are in a life unplanned and not desired. Not only have our bodies changed and continue to do so, but all of the crevices and other areas of our lives are also altered.
For me it began over 25 years ago when I couldn’t sit for any period of time. Sitting affects all of life. Change… clickety, clack. Then I began to see the changes fraught by my disease as my ankles, ears and cartilaginous parts became misshapen, more pain came onboard causing relationships to be altered due to what I could no longer do. Internal problems began with heart problems, irritable bowel syndrome and dryness of membranes, called Sjogren’s Syndrome. My original disease which had been taking me down a sidetrack for years was finally identified as Relapsing Polychondritis. Some of our journeys have no ticket stamped with a destination and we have to wait until some knowledgeable physician stumbles onto a symptom which reveals some answers for us. This year I have been visited by cancer and it has changed my appearance as my chest is left with one little lone survivor and I try to dress accordingly. As an added bonus my original disease has reared its ugly head and due to the treatment of it, osteoporosis has taken a toll on my spine, as well as my teeth and eyes.
Now I get to be shorter, minus one breast, limping along still unable to sit. Gracious, I do sound like a mess but I can still hear the clack of the wheels as my life still heads along toward some destination, some surprise which is uniquely designed for me.
I realized some time ago I am not alone on that train. I have many to accompany me on this journey. They hurt like I do. They are also seeking the joy and the view from the train. Oh yes, there is a view outside those train windows and it is often a beautiful one as the landscape of life flows by outside ourselves. We just have to remember to look out said windows. Sometimes the train slows down long enough for us to enjoy the view, get off the train for a break and savor the enjoyment of love, laughter and others. Life is all around us, for us and within us and it is up to us to do something as simple as looking out that train window. How’s the view from your seat?
Each of us on this journey has to decide not just what we can’t do, but what we can. We have to stop grieving for that which is lost and see what is found and lying before us. I don’t know where my train is going but I do trust in the engineer and believe He knows where I am going. No journey is endless or without reason if one can learn, savor and live it with as much gusto as possible. Some days my gusto is the size of a teaspoon whereas other days it is greater. Is a teaspoon of joy and love of life really less than a whole bottle full? Doesn’t it depend on the who, the what and the degree of enjoyment?
As you know, my husband is also an RN. He’s a large, burly “man’s man” and did not relish going through his obstetrics classes in college but he had to. One night he had a young expectant woman in labor who was doing a bit of screaming and she said, “I changed my mind, I don’t want to do this.”
My dear spouse looked at her and said, “Sorry, honey but the train has already left the station.”
Well, my dear friends and fellow travelers, our train has already left the station so we might as well find a way to enjoy the ride.
Tonie, I understand what you’re saying about the degeneration of your disc but don’t necessarily agree with you that resting doesn’t help. I think if you work your back hard one day, it’s a good idea to let it rest the next. Heavy lifting, which I know you do, is just asking for trouble. I know, you don’t always have someone else to do it but timing, dividing jobs in half, asking for delivery or help are all things you could do. Even my PT said to do the exercises I am now doing every other day.
Interesting and fun to reconnect with old friends and yes, it is surprising how some of them go in directions you never would have guessed they would when you were in HS. Glad some want to get together.
I like the article and pics you sent me of those four sisters on FB. I couldn’t help but be reminded of my own sisters and how we were a family of four girls. Mom always said she felt left out because we all loved our Dad so much. She always wanted a son. I like knowing some families, like those four in the article are still close. I only, as you know, have one sister left and we are no longer close so it’s a bit different for me. I miss the earlier days so much sometimes. Life can have pain in so many different ways.
Hope you’re having a good weekend. I’ve got to work on tomorrow’s new blog and then make out a shopping list. Later, Sue
Hi all, just wanted to let you all know I stayed in bed until 3:00PM today. Back felt better but hip hurt pretty bad coming down the stairs. In all honesty it hurts the worse sitting. I have tried every possible way to sit to get out of pain. Every once in a while I get relief for a few minutes. That’s why I was so happy about driving and sitting with no pain. I had to take my DH back to work on Friday as one of the belts broke in his truck. He is the one who kept telling me my seat was too far back and not high enough up for me to see properly. So instead of me telling him I appreciated his advice but I was comfortable with no pain, I started messing with it and hurt all the way home. I will work on it in the am when I go to get it tested. I also go to see my pain doctor tomorrow. Maybe he will have some ideas. Thank you all for the well wishes. Hope I get my inspection tomorrow. Prayers please.
Sue, I do love my van but now that I have spent all the money on getting it fixed, over $3,000, I don’t have money to try and get another one. It has an almost brand new lift in it for my scooter. As Tonie said, God is an on time God. It will get taken care of.
I hope everyone had a great weekend and sleeps good tonight. Chat later. I will let all of you know what happens with the inspection tomorrow. Love, Donna
Resting is helping it, and I do push it, I know. I push everything. There is just so much that can get done around here as in delivery etc. But I will try to think more about it Mom 🙂 I had forgotten you were 4 girls. I just liked the writing and descriptions on the photos. I did not notice the photographers shadow until they mentioned it. It just touched me somehow. I am glad you enjoyed it. My older brother is coming tomorrow and his wife. It will be good to see them. Trent will be 75 this year, and he is not holding up well. THey don’t make the trip much anymore cause it hurts his back too much to drive (same thing I have). Gotta make it all last as long as we can.
ps put tuna on the shopping list 🙂
I don’t think it is anything, but I have to go back and have another mammo on Wed morning. There is a small mass showing up in my left breast, so they want another look. I have “dense breast tissue” so it makes it difficult to get good pics ( so they said). Just say a prayer that it IS nothing. I am not worried , won’t unless they say it is more.
SO…that being said it is a beautiful sunny day, and I really think I could sleep most of it away. But..per usual, I have a ton of things to do. and I want to be back by the time my brother shows up. THEN I can sit and rachet jaw for a couple of hours with my sis in law, show him all my chickie babies. and horses. I may ride Baby this evening, I will do so with someone around to help in case she gets too frisky. I used to LOVE that type of horse, but now the dangers of hitting the ground are too high 🙂 I think she will be fine.
Have a wonderful day all