Having a progressive illness, there are constant reminders that life is, and will continue to be, changing and increasingly challenging. Physical abilities wane and, as they do, so does comfort and peace of mind.
I’m 53 years old but really, with the accelerated aging of MS. I calculate my age to be about 85. As I climb in age, MS advances my body further along than calendar years. While I have known I have MS since I was 26, I was able to shove it in a corner of my life for many years (MS was active but not visible to others). It wasn’t until about 7 years ago that I started a journey of transforming from normal walking to spending most of my days on wheels.
MS attacks like an aggressor as it wages war for valuable territory. It creates a power struggle within me as it battles and often gains acreage on the borders of my being and whittles away at my physical abilities.
I fight in many ways to stand my ground and retreat only when there are no options left other than surrender.
Pride is a complex emotion. At its best, it helps me retain whatever independence I’m allowed, but the fine line between self-sufficiency and stubbornness is often difficult to define. It sometimes boils down to time efficiency and comparing how much time it would take to do something on my own versus asking someone to do it for me. I ask ”will doing it myself benefit me or others or is it better for everyone involved for me to ask for assistance?” (It’s likely easier for someone to pour the drink into the cup than to wipe the floor after it has spilled.)
I try to keep perspective by remembering that it’s 2013 and I live in American where ADA laws make my life incredibly easier and more enjoyable than it might be in another time and place. I’ve lived in other countries and have a clear picture of the advantages I have in time and place.
And at the same time, grieving has become a necessary part of my life. Difficulties in life don’t go away. You don’t get over rough things, you have to go through them. Grief is dealing with loss in a productive way and results in being able to move forward.
Each time my disease progresses enough to take away some ability, I experience that loss and the sadness that goes with it. With a progressive illness, change is constant and so grief can become a normal state of being.
“Hope doesn’t always have to be sunny. Sometimes hope is just plain honesty. Sometimes when we are so down that we don’t even think there is an up, honest expression of our feeling is as close to hope as we can get.” – Barbara Johnson
“We all find ourselves in the valley of despair sometimes. But I believe we grow in the valley, because that’s where all the fertilizer is! So learn to welcome the valley times, and see all the growth in character that comes from them.” Barbara Johnson
“We don’t have all the answers. Some days I wonder if we have any, yet I know that when we throw up our hands after trying fruitlessly to make sense out of all this, we can only cling to Him, and know that we don’t have to understand.” Barbara Johnson
“Joy is not the absence of suffering but the presence of God. We all go through pain and sorrow, but the presence of God, like a warm, comforting blanket, can shield us and protect us, and allow the deep inner joy to surface, even in the most devastating circumstances.” Barbara Johnson
“God is present and ready to help you right where you are. Reach out in a simple prayer to Jesus and feel Him now take your hand. With His hand and power at work in your life, you, too, can have your tears turned into joy, your night into day, your pain into gain, your failures into successes, your scars into stars, and your tragedy into triumph.” Barbara Johnson
“Your feelings are honest and normal – but not forever. We are in the furnace of pain to become gold, not to melt away to nothing.” Barbara Johnson
“A friend wrote me that we should live as if Christ died yesterday, arose this morning, and is coming back today! That helps us get some perspective on all the areas around us which seem like disaster zones.” Barbara Johnson
“God loves me so much that He will accept me just as I am, but He loves me too much to leave me that way!” Barbara Johnson
“Sometimes you have to look to the past to look to the future to gain perspective on the present.” – Christopher Faria
“There is no distance on this earth as far away as yesterday.” – Robert Nathan
From Inside MS Oct-Nov 2006: