1. Creating the Best Life You Can
Premise of our book, Living Well, with Illness. It was not dedicated to any particular illness, but to those living, in particular, with invisible illness.
It has spoken to so many, we have spoken to so many. It is clear to us from our own experience, and from feedback from patients, that there are stages that must be navigated to find your way to having a meaningful life with illness.
That is what we want to talk about today. Please be aware that even though I have gone through all these phases, and I have largely regained my health, I have been where you are.
Not in terms of the specific illness you are living with, but the challenges of building a life while living with an illness.
KLS Foundation 2018 Conference

2. Navigate the Phases of the Illness Experience
Getting Sick
Being Sick
Grief and Acceptance
Living Well
Navigate the Phases of the Illness Experience
GETTING SICK – is a time of confusion and fear. Symptoms come and go, you don’t know what’s wrong, your reporting is not being believed by physicians, and sometimes friends and family. You must get answers.
BEING SICK – is when you begin to take some control over your condition. You probably have a diagnosis, or diagnoses, you may be experimenting with medications that have proved to be helpful for others. You are beginning to look at lifestyle changes that may help you be more functional and stable.
GRIEF AND ACCEPTANCE – There is often a moment when it finally sinks in that the life you were building, the life you were planning, is gone forever. Even if your health is restored, that past will be gone. The recognition can and should take you to your knees. It is a tragic realization for your and for your family. You need to grieve this loss as you would grieve a death.
LIVING WELL – Once you have grieved for the person you thought you would be, you can begin to build a life as the person you are now. A person with an illness. A person who is wise and experienced.

3. Make Peace with the Life That You Have
What is Really Going on Here?
What Can I Say or Do to Take Loving Care of Myself?
What is My Power for the Good?
If the Answer is None, Work to Change the Situation
Make Peace with the Life That You Have
Your life may feel unreal, you may have unsustainable hopes and fantasies. You may have been kidding yourself. How do you build a real life, in the real now for the real you. These 4 questions helped and continue to help me.
WHAT IS REALLY GOING ON HERE—not what you wish, idealize, hope, prefer. What is really going on? How can I need more rest when I spend days on end in bed?
LOVING CARE OF MYSELF – The key words are loving and self. Put the spotlight on you, be kind, caring, considerate, protective of you.
POWER FOR THE GOOD – Sometimes we are in a situation that is uncomfortable, we don’t know why, so we ask the questions and when we get to this one, the answer is, I don’t have any power to make this better. This is not my problem to solve. I can’t change this person.
CHANGE THE SITUATION – It may be you need to get out, of that physician’s care, out of the relationship, out of that school, club, clique. If you can’t be good or do good in it, get out.
When you are living in strange territory, and no one else that you know is living there, these 4 questions can help you find your way, in a loving manner and with a kind heart.

4. Make Your Own Top Ten List
Take Care of Yourself First
Be Honest About How You are Feeling
Enroll in the School of Whatever Works
Search for Silver Linings
Make Your Own Top Ten List
You First—This is particularly true for women of my generation. We were taught to put everyone else first. Never ourselves. That simply does not work with long term illness, you must put yourself first.
Be Honest—This covers a huge range of situations. Who do you tell? How much do you tell? When do you tell? All those are up to you. You get to make your own rules. But you must be honest with yourself and others to live successfully with your illness.
Whatever Works—There is western and eastern and alternative medicine. There is meditation and yoga and just sitting on the beach. The point is to open your mind and heart and don’t decide in advance what will help you. You can’t know until you enroll.
Silver Linings—This is the saving grace. The person you can become as a result of your difficult journey. The person you may not ever have become had you not experienced these great challenges and difficulties. I had time to write again. I am empathetic. People trust me with their secrets. I have a service heart. These are my Silver Linings.

5. Find a Way to Share Your Gifts
A Young Girl is Born with a Mysterious Gift
An Old Man Teaches Her What It Truly
Means to be Gifted
She Finds the Pattern in the Stars
She Learns the Lesson of the Tide Pool
(Wisdom from CeeGee’s Gift, A Novel)
Find a Way to Share Your Gifts
I’ve recently completed a novel that I will be releasing in the fall. It began as a one act play, then was a young adult novel, then finally become a inter-generational novel, for young and old. It is about a gifted child and how learning to give transforms her life.
CeeGee is sent by her mother to help an old man with his garden. She has what she calls a Knowing, and tells him his time is short, to get his affairs in order. As they grow closer, she tells him about her Knowings, the curse, that she has known terrible things, but helped no one. He tells her she has a gift, not a curse, then says “ You haven’t been given a gift, you have a gift to give. It’s not for you, it’s for the others.”
And the important message, “The reason we are here on earth is to discover and give our gifts. Everyone has gifts to share.” Illness does not exempt you from this purpose.
The pattern in the stars and the lessons from the tide pool are the large and the small of the mystery of life. There is a pattern in the stars, but it is so big and vast, we may not be able to connect the dots.
And the tiny crab in the tide pool may not know that the tide is coming in, or a storm is on the horizon. It is beyond understanding. But that does not mean there is no meaning in these patterns. In some way we must just trust that we are part of something bigger than ourselves, and like that crab or that star, we are an essential part of that pattern. Even if it is beyond our understanding. Seek your gifts.