I am a woman with a soft voice, but a steely constitution. All my life I have been told, “Speak up we can’t hear you.” So be careful what you ask for, as I am Speaking Up.
I. Learning to advocate for yourself and others
Question: Having walked this walk with your husband, what sort of things did you learn as a caregiver and advocate?
Jeanne: It is important to live well and respectfully in the present. The relationships you engage in every day need to be based in love and trust, because you may one day need someone to advocate and care for you.
Determine who you want to be your spokesperson if and when you are unable to advocate and speak for yourself. You need to find someone who will do what you want them to do… as opposed to what they think is in your best interest.
Before agreeing to be another person’s advocate it is imperative that you understand the sacred covenant that accompanies the role of advocate.
Remember it is not about you… You are the advocate.
Question: What does it take to become a good advocate?
Jeanne: One needs to be willing to ask the hard questions, even when you don’t really want the answer.
It is important to listen to the experts, but also pursuing the full truth. Know that there may be times when you need to walk away from the “experts” if they have agendas and have already written the conclusion.
Learn the jargon and speak the language of any field in which you have to advocate. Do not allow people to walk over you because they speak a language and use words you don’t understand.
Do the research. Seek out the experts and determine who is publishing in this field. Is any cutting edge research being done that your community medical establishment may be unaware of?
Question: In any given situation, you have to deal with a lot of different kinds of people – lawyers, doctors, etc. What kind of interpersonal skills do you need to have to be a successful advocate?
Jeanne: It is important to read the nuances of the situation, as there are times when you achieve more with “sugar” than you will with strength. For example: The nurses on the hospital floor will be your eyes and your ears and your heart and your hands in your absence. This is a difficult job and when you return kindness for kindness the person you love will get better care.
However, if someone isn’t giving you support and providing you with clear information so you can make decisions then you may need to use strength.
For example: When speaking to people who use medical jargon.
There may be times in dealing with the rigid hierarchy of the medical community when you feel blocked and unable to move ahead. In times like these you need to be like water… seeking another path.
Question: How do you help the person you’re advocating for come to terms, if the situation is not going in their favor… or they have to accept a less than perfect answer?
Jeanne: There may come a time when you have exhausted all alternatives and you yourself have to understand when to take no for an answer.
Sometimes you have to accept the circumstances just as they are and learn to live in the new reality with peace and joy.
You owe it to your loved one to be aware if you are in denial.
Question: What do you mean by that?
Jeanne: Even people who are otherwise good advocates and caregivers can be in denial. Especially when there are deep, personal connections.
The advocate must really listen to the desires of their loved one. Who is pushing the frontier for prolonged aggressive treatment? Who is in a place of acceptance? The desires of the person who is ill must determine the course of action. The person who is ill must have their space and make their own decisions.
For instance, they may need to get their personal business in order, make decisions about their death and funeral arrangements, disperse possessions, etc.
II. Spirituality: How do you learn to live life, when you become aware how close the line is between this world and the next?
Question: When faced with a terminal illness, how did you not just give up?
Jeanne: Initially, we were stunned and shaken to the core.
Soon we had to realize that all the talk about death was not helpful. The truth is, we’re all walking the thin line between life and death – the difference is some of realize it acutely, and learn to live in the light of that reality.
We made the choice to focus on the here and now. It made us more mindful. We no longer had the “luxury” of going through life on auto-pilot.
Question: Let’s stick with this side of reality for the moment. What did you have to do to keep yourself strong for the here and now?
Jeanne: We had to silence the inner voices, the incessant chatter of fear and anxiety.
We had to learn to be present – and that meant not looking too far down the road to what might be. There were enough day-to-day worries, without taking on trouble from the future. If we took things one day at a time, things became more manageable.
This gave us a history of success. When things came up again, we could look back, draw on resources we had developed, and find some comfort knowing we had dealt with similar issues successfully.
Question: Illness and difficulty raises a lot of uncertainties. Uncertainty is difficult because it leaves us feeling constantly out of control and insecure. What can you tell us about dealing with uncertainty?
Jeanne: Let me say this, even though doctors are supposed to be the experts they are also human beings. In our humanity there is imperfection-imperfect knowledge and an inability to know the future.
There was a lot they didn’t know – about Fred’s illness and about Fred himself. Or about what the future really holds.
In that sense, the present was not different than the past. We didn’t know what the future would bring. So we didn’t take the doctor’s prognosis as the Gospel. The future was not in their hands, it never had been.
What you have to do is get comfortable with the space between what is known and what is unknown. Because the illusion is that the future will be like today. But that’s not the truth.
In the book I have a whole chapter on everyday miracles.
By staying in the present you actually get to see little miracles all around us… they’re there even in tough times. We get to catch glimpses into the unknown; things are revealed to those who have eyes to see them. When we look too far down the road we miss the beauty that’s right in front of us.
Question: You seem to be talking about living the present moment – which seems to be a key to spiritual strength and peace. That’s hard for any of us to do. We think about the past, we worry about tomorrow. How do you live in the present moment?
Jeanne: So by staying in the present, you string together a good moment, then a good hour, then a good day… and they become strung together into a good life.
One of the most important aspects of living in the present is to stay with it…even in the most difficult of moments try to figure out what you’re supposed to learn here.
Question: What if you’re surrounded by the “gloom and doom” people, the worriers, and the people who don’t have the kind of spirituality that you have?
Jeanne: Set healthy boundaries. Protect yourself from the people who spill negativity into your space.
This is a good reminder for us all. Do we really want to spend our time with people who are bringing negativity to us?
III. Leukemia Awareness – What does it take live with someone who has leukemia or related diseases.
Question: It’s Leukemia Awareness Month. You lost your husband to a disease called multiple myeloma. How are these diseases related?
Jeanne: Leukemia is proliferation of white blood cells. Myeloma is the proliferation of immature red blood cells.
Question: Are the symptoms similar?
Jeanne: Yes, both are bone marrow cancers, and the marrow is where our blood cells are made.
The symptoms associated with bone marrow cancers include fatigue, shortness of breath, increased infections and prolonged infections, unexplained bleeding and bruising.
Specifically with myeloma there is back pain and fragile bones.
Question: Did you recognize Fred’s illness right away?
Jeanne: No. Often these symptoms look like other problems.
But when they come in combination they need to be looked at quickly. Because the sooner these illnesses are detected, the greater chance there is to prolong someone’s life.