When your body takes leave of you before your mind does, everything you do is changed. Decisions, priorities and all that is comfortable, suddenly no longer fits. Action is required if we are to lead fulfilling and joy filled lives. I know it’s the inclination of all of us to slide and do nothing. We certainly have every excuse known to man to do so; as we are in pain, suffering and have lost so much. We have closets full of excuses, reasons and self-pity by the bucketful. The unfortunate result of sliding is, of course, the destination. If we even take a careful slide, we can end up at the bottom of that cold aluminum slide of life finding ourselves ending up, end up. You’d better be wearing your best underwear. We also lose much that we could have hung onto if we had put just a bit more care and thoughtfulness into our daily lives.
Lethargy requires no action, no batteries and no deodorant. I have learned to loathe the whole process of adapting, changing and altering so much in my life. I’m certain you often feel the same. Our thoughts and speech become full of “If only I had…” and our actions reek of anger. We are angry with destiny, God and anyone else we can think of. We must beware of who gets in the line of fire when that anger explodes. Innocent people can be hurt.
Winston Churchill, the famous leader of England during WII used to use the initials, KBO. They stood for Keep Buggering On. My friends who also suffer loss of health, ordinary life and other losses, we must Keep Buggering On. I realize it is extremely difficult to muster up the courage and grit it takes to plan, read and inquire when we are in pain, but we have much to lose and everything to gain. I know your life and mine, well, they haven’t gone according to plan; but life seldom does. We never seem to mind changes when they are happy ones, but the bad ones, that’s a different matter. None of us stood by our school desks in the fifth grade, wearing saddle oxfords and a cardigan sweater and shared, “When I grow up I want to have pain every day. I want to be depressed, downtrodden and miserable. I want to lose the job I went to college to learn and want to worry about how I’m going to help support my family. I am really looking forward to that.” It would be ridiculous of course, but is it more ridiculous than giving up? Incidentally, when I stood by my desk as a child, I stated I wanted to be a nurse when I grew up. I think it had something to do with the fact the boy I crushed on wanted to be a doctor; but I could be wrong.
1. Once we decide we are going to fight back and keep buggering on, we have many decisions to make. The first decision we must decide is that we are in charge. This is my life. This is your life and belongs to no one else. It’s difficult to stand tall when you hardly feel like standing at all, but you can be mighty from a sitting position or even a lying down one. Each time I write to you I am lying down. I like to think a few of the words that flow from my brain onto this computer have strength from that position. It’s the words and the courage our words convey that carry the message, don’t you think?
2. Next we must decide what we are going to do about this condition, if I can use so kind a word. There are so many other words which apply, but we’re being nice here, right? We are not at the mercy of doctors unless we allow ourselves to be. We must question, seek and fight back a bit at times. Most of us usually face that painful decision regarding our life’s vocation. Can we work? Can we work a little or not at all? It took me three years of working part time as a hospital supervisor, crying all the way home after a shift then struggling to get out of my car to decide I could not work. It took another two years to apply for disability insurance because I was certain, any day, I’d find something I could do as a nurse. Writing filled in the gaps in my life and I would have gone nuts without it. I found other crafts I could do while lying down such as counted cross stitch and quilting. Expressing how we feel is of utmost importance. It’s that little valve on top of the pressure cooker of life. I urge you to keep a journal. It keeps you from spewing all that pressure onto your family and friends.
3. For me and for you, the search was to find something that helped. I’m referring to all rescue activities and lifelines, from physical therapy to creative projects and crafts. There is so much of each of us we never had the time to unveil, it’s good to start unveiling and some of the therapies help to make that possible. Imagery can be very helpful in this area. Imagine your life is a beautiful, finely etched crystal vase. It has fallen and lays shattered on the floor in hundreds of tiny, sharp shards. Now, imagine your life, that vase, in backward photography, as when they run a movie backwards and all of those pieces are flying through the air and finding their original placement and that vase is becoming whole, once again. Imagery has been used for damaged and diseased bodies and does make a difference. It isn’t magic but it does urge the mind toward healing. It makes life doable.
4. You must learn to love yourself. Shakespeare said, “Self-love, my liege, is not so vile a sin as self-neglecting.” You can loathe the disease, the injury or the pain but you and I must learn to love, respect and honor ourselves.
5. Each of us must learn to be selective in our activities. We need to know when to say no and when to say yes. Pain is limiting and can tie you to home as surely as cords or a leash but sometimes, we must decide. Is it to be rest for me or is it time for an activity. So many things influence that decision. At first, I had a tendency to soldier on, and then I would arrive home, crawl into bed on my hands and knees because I couldn’t do it any other way and cry. I soon realized I had to learn how to say no to certain activities and occasions. Over the years, I have learned to be more forthright with others about my limitations and find there are times I must also say, “Yes.” These yes times are selected very carefully based on the importance of the event not only for me but for others. Holidays, family birthdays, family emergencies: all fit into that category. When my son was married, several years ago I knew I had to wear high heels to his formal wedding. A lovely peach colored lace dress needed peach heels, not tennis shoes. I wore them and removed them at every opportunity even dancing with my son in my stocking feet. No one cared. I survived but that was the last time I wore a high heeled shoe. I adore “kidsitting” but often have to limit the time spent at it. My smallest grandchildren accept me for my “bad tush” and lie down with me as we watch the latest Disney flick. You don’t have to have a good sitter to be a loving parent or grandparent, nor do you have to have a whole, well body. You just need love, willingness and a sense of humor. These are the things you and your children and grandchildren will remember. You can’t always say “No.”