Chapter 10 Living Well

1. Will your personal philosophy change?

No one passes through the eye of a storm unchanged. You cannot expect to experience chronic disease and all it encompasses without changing as a person. A few people I have encountered who are dealing with chronic conditions have not weathered the experience well. They have become embittered and irritable. They see only the negatives, dwell in the house of self-pity and do their best to remain miserable and see that everyone around them feels that way too. “I am being tested!” this person yells in frustration. True. And he is failing the test.

The majority of people I interviewed who have chronic conditions are also being tested but are working towards the highest grades they can get. They see themselves changing but recognize that it is for the better. And so, hard as it is to accept, and backward as it seems, they realize they have benefited in some ways by having the disease, the pain, the restrictions, the enormous changes it has caused in themselves, the people around them and their lives.

“When I’m asked ‘where are you now?’
I want to be able to say, ‘I’m in a state of serenity’.” Jocelyn

One of the most noticeable changes may occur in your thinking. Over time, your personal philosophy will change. Your philosophy of life begins with a lot of the teaching of the generations before you, your cultural and social paradigms and alters as you live and learn by experience. The experience of dealing with a chronic disease may be the catalyst for a great amount of change in your philosophy. It is often at this point that you reject many of the old teachings you have never questioned previously and begin to build a much more personal view of how you will live your life. I know I quickly grew to believe that life is too precious to be wasted. Each minute counts and should be lived to the fullest, whether I am sitting quietly absorbing fully through my senses, or running flat-out across a meadow trailing a kite. I also believe strongly the old adage don’t put off for tomorrow what you can do today. I recognize both our children have adopted both these philosophies. Here are some other changes people with invisible disease have made in their personal philosophy of life.
• It’s okay to be alone.
• Live moment to moment.
• Live how you think. Looking too far ahead is overwhelming and often moot.
• Let go of the concept of age. Choose to be around people you have more in common with regardless of their chronological age.
• Accept things aren’t perfect and you can’t always have what you want right away. Learn patience.
• If you think “no big deal, it could be a lot worse”, you can become the calmest person around in a crisis.
• Learn to put yourself first, and give yourself permission to do this.
• Don’t allow yourself to be swamped by emotion.
• Keep trying and don’t give up. Eventually you will find what you need.
• Look at living with a chronic disease as a challenge that makes life stimulating.
• Don’t let your troubles be the only thing with which you’re involved. Focusing outward eliminates feeling alone.Laughter is a great people gatherer and stress buster. Use it often.

 “Why not laugh at yourself? It’s healthy and doesn’t
make your nose swell-up like crying does.” Sylvia

Over four years ago I was amazed to find that my sunny, active life had turned into a nightmare from what I eventually learned was a chronic illness. And, since that time, I have continued to be amazed by the intensity and promise of pain and the paralyzing effects of fatigue, by the effectiveness of “strange” medicines and the ineffectiveness of unfocused effort, by the saintliness of some husbands and the loving concern of family and friends, by the skill and wisdom of my health practitioners and the skill and wisdom of the human body, by the exquisite unfolding of the human soul and the exquisite awareness that the wild dog of my nightmare has become my beloved companion. Now, she is walking beside me out of the nightmare into a life we had only dreamed of.

This statement by Diane says what so many of you will discover and try to share with others. However, few of us are able to identify so succinctly the trials of the flesh or express so eloquently the blessings of those trials. The one thing we do know is that there are many. Diane mentions some of these and the others I interviewed share more.

 “I made up my mind I’ve got it [heart disease] so make the best of it.” Robert

2.  Are there plusses in living with a chronic disease?

Over and over, I make the point that you will see many blessings have come into your life along with the disease that seems like an enemy. That riptide of disease that seized you and sucked you under has made you stronger, purer and has stripped you to the essentials. Your character has changed along with your values. Suddenly, you find you are a better person because living with your disease has taught you:

a) Increased compassion

You can’t spend days in the hospital watching the other patients around you without softening your outlook toward humankind. And you can’t sit in a crowded waiting room, registering the pain and impatience of other waiting patients without having a new awareness of them. Face it. With every experience you add to your personal resume, I bet there are a few more people in the world with whom you can identify. Until you’re sick, hospitalized, nursed, treated and left waiting for aeons, you have no idea what it is truly like, what people suffer through in an attempt to get better. Once you know, you can’t help but become more compassionate and look at everyone you meet with a kinder heart and a less judgmental mind.

Matthew: I developed a huge capacity to understand people’s suffering and feel compassion.

b) Increased empathy

Sylvia: There is no doubt in my mind that I’m a nicer person now. I’m a better person, more compassionate and empathetic.

c) Increased patience

Sylvia: I have lots of patience sitting in doctor’s offices because I make it a social occasion. I sit and chat with the people. I will wait as long as it takes because I’m just so happy he’s my doctor.

It’s a question of making an attitude change, like standing at the prescription counter. How you feel in your head isn’t going to have anything to do with how fast you get the prescription. So you might as well relax. I know I need their services, and I need to keep a good relationship with them.

d) Increased tolerance

Sylvia: I say to myself “how would I feel if I was in their shoes? I’m not as judgmental and rigid.

Carrie: It bothers my daughter when people and the children look at me and they have no understanding of why I’m shopping from a wheelchair. To my daughter this is normal and to them it’s unusual. She asks,” Mom, doesn’t that kind of bug you?” I answer, “No, not really because they don’t understand, and you can’t understand that because you’ve been brought up with it.”

I made a huge leap forward in this area. Before Crohns, I judged people instantly, usually coming from my Type A perfectionism. If they didn’t do it fast enough or well enough I gave them a negative rating. With the experience I gained from dealing with Crohns, I learned to look beneath the surface, to find the reason behind the behavior or action. Now, I try to guess what is motivating the person instead of judging them. I’ve learned my right or wrong is just that – only mine. It might not be the way the next person looks at the issue at all. I conclude there is no right or wrong, just different ways of doing something.

e) Increased humor

 “Laughing is my way of coping.” Naomi

Shelley: I have learned to laugh at myself. I will catch myself snapping – blowing everything out of proportion and I will look in a mirror and laugh at me throwing a tantrum.

BOOSTER BOX

An elderly woman from my church became a regular visitor to my home. She was a real dear, but felt ridiculous when her knees just couldn’t get her upright. I had to get my walker and hobble over to her and hold it so she could pull on it to get up off the sofa. We were both laughing because it was me, the woman with MS, helping the woman who’d come to visit me. It was a good moment. Carrie

Sylvia says she doesn’t use humor as a deliberate form of therapy, as in watching funny videos to get laughing, but Sylvia uses humor as naturally as the rest of us eat. She spices up her comments with a bit of wit, self-derision or light-hearted joking. She gives it as a gift to everyone, including me for this book. Sylvia has taken her humor on the road as an act, speaking to groups about her illness whenever asked. She wrings out all the emotions but always gets them laughing. For instance she tells me she has a standing joke with her pharmacist that if she hasn’t been in there by 5:00 p.m. any given day, then they better phone the hospital and check if she’s been admitted.

f) Increased appreciation of people

A large percentage of you soon learn to appreciate people at a much higher level. Whether it is a family member, friend or caregiver, you realize this person brings much to your life. You come to understand that people are more important than time, things or self (within reason – after all you’re a person too). You place greater priority on making time for the people in your life, and you show your appreciation of the things these people bring to you. In appreciating people openly, you become a good role model to other members of the community who have not been forced to learn the difficult lessons of chronic disease.

“Relationships are much more important
than the things we acquire with money.” Sylvia

When was the last time you did something spontaneous to show someone you cared, were appreciative, thankful to have them in your life, welcomed their company or thoughtfulness? When was the last time you complimented a stranger for good service, or looking nice, or being thoughtful? Most people suffering dis-ease close the lag time on these actions and increase the quantity of them. Partly this is due to the greater appreciation for life. You have learned by coming close to death, and somewhat it is because of your increased appreciation for humanity. It all comes down to the philosophy of living each moment to the fullest.

3. What new doors will this open?

I covered the new opportunities quite thoroughly in Chapter 8 Lifestyle Changes. However, here are some examples of changes the people I interviewed adopted that prove they are thriving despite their disease.

a) New Priorities

Naomi: We are so stupid when we’re young. I look back to when I was in my twenties and important people were passing through my life. But I was so tied up in the things I wanted whether it was being a mother, trying to get more money or a better job. I didn’t grab those people and say, “I want you in my life, you’re important.” I would now.

Melanie: When your health goes, unless you are very strong, you will never get it back. Prioritize what you really need.

b) New ways to contribute

 “I can do anything I put my mind to.” Lily

You can’t spend months or years being cared for by others without wanting to give something back. Most of you will have a strong desire to contribute once you are on the mend. The ability to enhance the lives of others becomes a big part of your lifestyle. Throughout this book you have seen many examples of this drive to contribute. Phillipa and Sylvia began support groups. Norm builds things that are needed in his community, like notice boards and benches, things that will stand as a testament to his willingness to give back. Many counsel others on a group or individual basis. Some share their experience through writing and speaking. Sylvia nurtures the medical care-givers that have been so good to her – providing them with all sorts of warm fuzzies. You too will find something you want to give back, whether it is extra love and time to your family once you are on the mend, or advocating for social change that will benefit others. Big or little, your contribution is an important part of living well.

c) New ways to influence

I know few people who, having learned a lesson through extreme suffering, do not want to pass that lesson on to the people they love, in the hopes they will learn it second hand and not through the same crucifixion of body, mind and spirit. To this end, many of you work to influence your children, spouse, siblings, parents, friends, co-workers and the stranger on the bus. Your message might be anything you feel made a difference in your life. For example: for a healthier body, drink green tea, or always ask for a second opinion before undergoing an intrusive treatment. When I left the hospital the third time, I started to teach my children the benefit of deep breathing. I wanted to influence the way they dealt with stressors for the rest of their life. By expressing positive attitudinal philosophies around dealing with the upsets they encountered, I was able to help them to become more proactive. They both handle their stressors better than I did then.

Many family members are influenced to change their lifestyle because you introduce what you learn into the family plan. For instance, Susan’s husband and son have both become vegetarian along with her – that’s what she eats and cooks when she is healthy enough to stand in the kitchen. They support her in this. I learned that I could only find the peace and spiritual grounding I needed in a rural setting. My husband thus lives in the country with me. Hopefully, he will benefit from that influence and be more at peace and less stressed because of it.

4. Can you feel really alive?

Helen Keller believes so. She wrote, “The marvelous richness of human experience would lose something of rewarding joy if there were not limitations to overcome. The hilltop hour will not be half so wonderful if there were no dark valleys to traverse.”

When you’ve gone through the dark night of the soul, or the Biblical valley of death, you find that nothing is more precious to you than life. You grab it with both hands and live it to the fullest.
Forty years plus after spending months in hospital, undergoing multiple surgeries, almost dying twice and considering suicide many times, I thrive. My life is filled with the many things I love, and not just the sedentary pleasures like writing, reading, meditating, but with activities that demand a lot from me physically – downhill skiing, kayaking, camping.
I draw energy from nature, and when I am outside hiking a hill or swimming in the river, I know I am putting positive energy back. Finding that state of brightness, goodness, giving that you feel when you are living your life well, is a constant commitment to what you believe, to how you want to be, to what you want to put out into the world. I strive for it every day. When I am singing as I work, when my heart feels it will rise like a hot air balloon into the stratosphere, when I am bursting with gratitude, I know I am living fully. I am living well.

Melanie: Whether I would have committed suicide without that intervention I don’t know. I always said I would never do that to anybody, but at that point I was so low I didn’t care anymore. When I came through it I wanted to live so badly. That is my main focus now – wanting to live.

Once you have accepted your limitations, adjustments automatically follow. You are probably living a life more fully than you did prior to your illness (by that I mean a life of more value to you), because now you recognize that you have a choice. You can make each moment count for something or continue to waste time until it’s all used up.

Henry: I still take on new challenges like mountain biking or rock climbing. But I climb to get to the top to see the view and experience the excitement of that moment. I no longer climb to prove anything to myself. It is more of a quality of life thing.

Phillipa: I look for things about which I can feel passionate, because passion is an important part of who I am and without it I would be half dead. Looking to incorporate that joy, or to release that joy, because I believe it is inside me. It needs to be released so that it can spring up and imbue every action, every word and every thought. Joy is an important part of me and must be made available to other people.

5. Is there abundance in your life?

“I have been given so many gifts I want to give them away.” Melanie

Shelley: I read in Simple Abundance by Sarah ban Breathnach that before we go to sleep we should write down five things we are thankful for. I try to do this nightly, but find when my SAD is worse, sometimes it’s really hard to think of just one thing. Then I will have many flow off the pen onto the paper and that is a good indication that I’m in a great space and thriving.

Naomi: I’m very thankful that I have many people in my life because they’ve helped me be a better person.

Melanie: I feel gratitude that I was able to work that hard. I feel blessed that a woman my age could do accomplish what I did.

As long as there is breath in your body there is potential for beauty, love, joy and hope. You choose the quality of your life by your attitude. If you see your chronic condition as just another challenge, you will face it with the same initiative and find creative solutions for it as you would any other. When you do this you choose to live well.

As I conducted the interviews for this book, each person I talked with demonstrated such courage, such grace under fire and such determination to not just go on but to constantly better themselves that it inspired me afresh. Your limitations need not hold you back but can push you in new and exciting directions. If we show the same courage, grace and determination as the people who contributed in this book there is no doubt we will thrive.

Life is a blessing on each one bestowed,
Blood feeds our body, God’s breath fills our soul
Sparking our mind and our heart to extol
We exalt in each moment of life. M

I want to leave you with this beautiful story, shared with me by a partner of a man suffering from MS. He has not given up his love of sailing even though he is long past the invisible stage of his disease and is dependent on a wheelchair for mobility now. He has found a new way to get around the obstacles, to do the things he loves – to thrive.

Victoria: “I was down in Florida with the disabled sailing group, and each day I was at the docks helping people get the boats rigged and off to sea. Some of them are kids that have been paralyzed from diving and motor accidents. There are some that do sip-and-puff, actually operate a boat by blowing into a tube. There is a great deal of activity until all the boats are out. I was engrossed in helping, then slipped back to the car when my partner sailed away from the docks. I came back later to leave his lunch on his electric scooter. I looked out and there was the dock covered with empty wheelchairs and scooters; and the boats all sailing toward the horizon. It looked like the Second Coming, like they had risen and been released.”

YOUR CHALLENGE

1. Keep a gratitude journal. Write down everything for which you are grateful – big or small.
2. Think of a new way to reach out to someone. Implement.
3. Surround yourself with sensory stimuli. What can you introduce into your life that smells good, looks good, feels good, tastes good and sounds good?
4. What lesson is important for you to pass on? Tell everyone you meet.
5. Is there a place you can make a difference? How? Take action.
6. Make a collage of all the things you consider blessings. Hang it where you can see it.

 

I hope the wisdom and advice these contributors gave so freely and well, helps you realize there is so much more in you to give to life. Live fully.