A wonderful read after you have had a chronic illness (or illnesses) after one year is the book, “How to Live Well with Chronic Pain and Illness” by Toni Bernhard.
It’s a wonderful book to read after you have made it through that first hard year.
It is a dreadful book to read when you have first been diagnosed.
Because this book will help you learn to let go, and learn to love it. It’s a handbook on the care and feeding of the new person you have become since your illness.
The first year the book will do you little good- as that first year is a time of adjustment. It’s for when you bury the old you and mourn her. Then you figure out the person into which your body has been reborn. We think of rebirth as something only religious people believe happens. Few know that it can happen to anyone,while we are still alive, and can be almost as traumatic as a physical death in the family. I think of it as suffering and surviving your own death.
There are those of us who will live for the rest of our physical lives with the BEFORE and the AFTER. It takes about a year before you stop looking BACK and begin to refocus on FORWARD. What’s next? No one is quite sure, not you, not your family, not your doctors and certainly not your friends, about just who you are now.
There is not set time for this rebirth adjustment, but my own general practitioner places it at about a year. She told me ,“I knew it would take you about a year before you began to ask me about living with this disease, instead of curing it.” I had been adamant there had to be something MORE that could be done, and had we not better be doing it NOW?
Today I talk with my physician about managing the disease. We work on what I can do to make things better. She consoles me when no matter how carefully I follow every instruction, I don’t feel any better. This could be baseline. It might not be, but it could very well be as good as it is going to get. I definitely know that things will get worse. After all, everyone ages, and despite our hopes of being that 100 year old still driving to the lake to go fishing, reality proved genetics trumps all.
In other words, unless all four of your grandparents and your own parents, are in their senior years and doing just spiffy, odds are you won’t be doing spiffy either. It’s only downhill from here for all of us.
Blaise Pascal writes of how we are all running toward a cliff and desperately distracting ourselves by looking side to side as we speed along. He saw much wrong in this as he felt we should be more focused on the end of life, rather than forgetting about it. I see much good in distraction. I have learned many ways of distracting myself from my pain and from what this illness has changed about my life. Books are carefully chosen. Old movies discovered and enjoyed. Friendships fostered online.
The old life of travel, vacations and conferences is gone. I can no longer just drop in on someone for a weekend and visit. It’s not just the physical difficulty of flying, it is also the economic changes that come with a serious illness. I am not able to afford airplane tickets and conference fees. My husband travels less ,to be able to be home taking care of me, so the days of frequent flyer miles to burn are gone.
I did go on one very lovely trip to Las Vegas to a conference, but only with the most extreme planning and care. I had my husband and brother to take care of me, and even so it was exceedingly painful to fly on the plane. The worst position for my arthritis is straight up in a seat. They say airline seats can recline but I don’t believe it. At least not enough to ease my pain. First class is nice, but once again, the cost is prohibitive.
I am adjusting ,with the help of the wonderful book mentioned above, to the new me. The very zen like approach of the book is “Accept and don’t fight so hard.” There are the fighters out there. I admire them, constantly searching the internet for the next big cure. I found it exhausting and also depressing. While others may be “oh a cure is being tested and tried out!” I am “Should I live my life waiting for this trial to go from mice to humans?” Should I base my life on a tomorrow where some trial in Sweden may prove beneficial, or should I acknowledge that these articles make me depressed?
Acceptance means figuring out just who I am now. Do I like this lazy person?
After a year, I have begun to think I do like this new person. She’s very different from the person I was before the arthritis and other diseases began their onslaught, but she’s also not a bad person to get to know. Accepting the person I am now is a big part of my recovery. It helps me plan my new life, instead of waiting for my old life to return.
There is one problem though that the early chapters of “How to Live Well with Chronic Illness” warns the reader about, the warning is that your acceptance timeline may not be the same as that of your family and friends.
“When you are better”, is something I hear a lot. “When you can travel again!” is another. I get “When you are managing better” and “When they find the correct medication” or “When you work harder with your physical therapy…” There are all these “WHEN” comments.
The book kindly points out that while you may be healing emotionally, and accepting the new life your illness demands, others need to accept the new you at their own pace.
Sadly, the author points out that there will be those you will never ever be able to convince that you are never going to be better. I feel I am “better” but my definition of better has changed drastically. I heard that someone has said about me “She seems to apathetic about her illness, if I had that I would be traveling to the best doctors and never satisfied until I was better!”
I admit my own mother is one of those people that fights her macular degeneration illness everyday. She has travelled to see specialists. She is in a clinical trial. She says “I am in my 80’s and I don’t have time to wait.” She is determined she will not go blind. Fighting is her way of dealing with it and I’m proud of her for doing so. That is her way. But it is not my way, and I realize that some of my friends may be upset with what they see as my apathy.
Zen like acceptance has no place in the life of many Americans with the “we can fix it!” fighting spirit. But, I spend enough energy and time fighting pain. I spend too much time fighting to feel I have a place still in the world. My self esteem took a big hit, as much of a hit as my body has taken physically. I don’t have a lot of spare time or energy these days, so I need to consider carefully how I spend what little time I have left.
I also have started to think “My life is not all about my illness. While my job is taking care of myself, how many people are just defined by their job?” I’m ready to focus on something other than my illness all the time.
Some of my friends and family are coming around. They are really cool with being more online ,than in person, friends. We joke and laugh online. Our conversations are not all about the illness, just like they aren’t all about their jobs to me. They are taking the time to get to know the new me.
The author warns, “Some of your friends won’t like the new you.” That’s fine. The things that I had in common with them are gone. That doesn’t mean that I am a bad person, it just means I have nothing to base our friendship on anymore. If your best friend and you went on bicycle tours together, and all you talked about was bicycles, your friendship may be over.
It can be like a knife to your heart when you are invited to something, and you know the person is being kind and you want to say yes. I joked to one supportive friend “Someone could say that the Beatles are reuniting, even the dead ones, and they are giving away free ponies after the show, and I still couldn’t go.” I want to go. I can’t. Telling me about the Beatles concert I’m missing isn’t going to make me better, as wanting doesn’t cure what I have.
I want to recommend this book to everyone fighting any kind of long term illness. But not the first year. Because you have to go through the phase of fighting like a mad man where it consumes your life, before you finally decide that you want to start living and not fighting. You have to get exhausted and then say “OK, so what CAN I do?”
It’s a true learning experience. But my experience isn’t going to be the same pace as all my friends and family. I have to give them time also,and realize some are never going to “get it”. Those friends I have lost along the way aren’t bad people. They are very busy people with interests that now differ from my own.
Also, people that stay friends with you just because they feel pity for you are not doing you any favors. Pity is a horrible thing to express to someone with a chronic illness. Pity is the worst thing you can ever express to another. It takes away their sense of pride and self worth. It saps their energy and pity cripples them far more than their disease ever could.
Only once you throw out the pity, the false hope, and the unrealistic expectations, can you truly begin to sit back, relax, and start living your new life. Usually from an easy chair or bed, but even the lazy life has its good points.