I appreciate these opportunities to speak about my experiences. I feel it gives me purpose, which has changed from my original plans.
I have learned volumes in the past 16 years living with Multiple Sclerosis and a 45 minute workshop or a 1000 word post will barely put a dent in the learning.
In Tim’s song, when diagnosed with Cancer he said:
“I went sky diving, I went rocky mountain climbing,
“I went two point seven seconds on a bull named Fu Man Chu.
“And I loved deeper and I spoke sweeter,
“And I gave forgiveness I’d been denying.”
An’ he said: “Some day, I hope you get the chance,
“To live like you were dyin’.”
I feel this is great advice for life with any chronic illness. If you haven’t started your Bucket List (a list of all the goals you want to achieve, dreams you want to fulfill and life-experiences you desire to experience before you die), take Tim McGraw’s advice and start now!
Recognize Personal Value: A very important lesson that will help us find joy is to recognize our value. Realizing that our value is not in our productivity or our performance, it is in our being.
Let Go of Past Pain: Another way to help us find joy in our lives is to let go of our pain.
Facing the pain is terrifying, but the joy that comes once you have walked through it is indescribably freeing.
The most natural reaction in the world is that of “fight or flight.” Therefore, our first reaction to any pain is to run from it emotionally. We shove it down deep within ourselves and pretend it is not there, or we mask the pain with anger or with substances. When the pain boils up and threatens to make us actually feel it, we tenaciously cling to the way we have coped in the past and shove it down harder into our soul, or burst out in anger, or turn to substances to numb ourselves. People anything to stop ourselves from feeling. However, that feeling itself is one of the greatest barriers of finding joy in our current experiences..
We can never be free of our past until we first face the pain it has caused us by truly allowing ourselves to feel it for the first time. Feeling and dealing with the pain is the only way to remove it and move on.
Introspection is the key. Look, listen, and feel what’s going on in your heart and in your mind. Many of us grow up feeling so flawed that we don’t think we deserve any goodness. But we do! We all do! Let go of the past and be free!
Find a friend if you need support as you feel your pain. If you need a friend, I’m here.
Grieve: You probably all know the grieving process. Elizabeth Kubler-Ross is famous for her understanding of grief. She identified 5 stages:1) Denial
Emotions that are often felt as we grieve, whether it’s the loss of a loved one or the loss of the life that we planned.
Sadness: This is the most common emotion and one we are all familiar with to some degree.
Anger: You may be angry at God, the doctor or the ’system. Something you love is gone. Why should you not feel angry?
Frustration: You want your life back and you can do nothing.
Guilt: The questions may come up. “Maybe I should have.?” “If only I had…?”
Shock and Numbness: Initially you may feel nothing. Time will reveal the painful reality.
I had accepted my life as I was experiencing it. The life-expectancy is not severely diminished with Multiple Sclerosis, it is often the quality of life that is affected. And I had done as Elizabeth Kubler-Ross encourages us to do, I grieved and in at some times still am.
Define New Reality: Five years ago, I wrote in my journal, “OK, Here it is in a nut shell – I’ve gone thru the five steps in the grief process but I was totally stuck in the emotion of it all. I didn’t know there was a “next step.” My friend, Susie Morgan, helped me see. Susie said “It’s time to define ‘your new reality’ – then invest in it.”
You know, I needed to figure out what I can do, what I want to do, and do it!”
We must put the knowledge of this disease in the back of our mind. Always remembering it’s there so we take care of ourselves, not in the front to spend all our energy and focus on the disease. When Susie suggested that I define my new reality – I understood. I took Elizabeth’s advice and mourned the loss of life as I had expected, then began to identify my new reality.
Write Personal History: It’s very therapeutic to write your personal history. As you write about your MS experience, you’ll be prompted to take stock of what’s important and what’s not; do more of the things you enjoy rather than “wasting time” doing things you don’t; and spend more time with loved ones and friends…
“Life as You Know It” is a book I created to both assist and encourage you to document your memories, life experiences and stories in order to leave a lasting record of your life. To download your copy of “Life as You Know It”, simply click here and enter your details into the form on the right hand side of this website. Once you’ve confirmed your request, you will receive the link to download the book.
Prepare to Meet Your Maker: Decide for yourself who your maker is. This is an understanding I gained when I was just 17 years old. My faith has strengthened me since and given me great peace.
I’ve found that “As we draw near to our Heavenly Father in obedience and righteousness, He will draw near to us. He will bless us, perfect us, and protect us.” just as Rulon G. Craven said.
Disease is something we have little choice over. The choices we do have will influence the Joy we feel while we’re alive, even while living with multiple sclerosis. I can honestly say I am blessed and I am very happy. It is what it is and I’m doing my best.