Celebrating anniversaries. Fun? Not always. Although not celebrating my 40-year journey, I am remembering. And sharing with you. Maybe my lessons will help you.
What did life look like for me and my family? How did I react? What have I learned?
WHAT HAPPENED?
Late in September 1978, I experienced a severe back muscle injury—for doing nothing. Or, so it seemed. The doc said I "tore every muscle" in my right mid-back. (Repeated the injury a year later.)
How?
Months later, we realized repetitious job tasks caused it. But these duties had been done by many others before me without incident.
Why?
Years passed before we knew the real cause: neurological weakness. Again, why? Who knows?
LIFE …
… Before the injury
We enjoyed life, having been married twelve years and having two sons, ages 7 and 10. Joe was in graduate school with 2 years to go. I worked in the campus library; he worked part-time.
… The first two years
An on-campus doc initially treated me with meds and total bed-rest. Several months later, she allowed a SLOW return to activities and prescribed three exercises. I built up from one repetition to twenty, taking a year to do so. Physical therapy followed but didn’t help.
House responsibilities fell to Joe and the boys. After I slowly regained strength, I began doing easy tasks, gradually increasing the work. However, I could never do normal housework again. Since we believed the injuries were work-related, we looked forward to our new life when I wouldn’t work.
… Later years
Following Joe’s graduation, we began this new life. Since I no longer worked, we thought my disabilities would cease. Not!
Although the pain was never as severe, full strength didn’t return. In fact, as the years progressed, I experienced increasing fatigability, weakness, and pain. I joined the invisible disability crowd. The docs acknowledged the weakness although they couldn’t “see” it. Others couldn’t see it either, and many didn’t understand why I could not take an active part in life.
Our sons grew up, graduated college, married, and became successful professional and family men.
REACTIONS
Emotions
During the first two years, negative emotions didn’t come into play since we expected everything to return to normal. We viewed hardships as a blip in life. We just dealt with the pain and disabilities as best we could.
However, more problems developed over time and it became apparent something was drastically wrong. We faced the questions “Why?” and “What now?” We wondered how to live. As Christians, we especially wrestled with why. (See God Connections for some answers.) God and the strength He imparted enabled us to thrive.
Anger. Frustration. Disappointment. Discouragement. Dismay at new diagnoses. Isolation. Lack of understanding. Just a few emotions we deal with.
Suicide
I include suicide because the severe hurt of ongoing storms brings disillusionment and a desire to escape the pain. When I realized problems wouldn’t end, I thought about thinking about suicide several times. But, I retained enough rational thought to realize that if I kept on that way, I might convince myself suicide was okay. IT IS NOT! (If you think about it, please see Suicide.) I knew that my husband, my sons, and my God would be extremely hurt if I succeeded.
Family life
Joe and I worked hard at letting our boys be children. Others suggested they should do even more work, but we felt it was important for them to enjoy their childhood whenever possible.
Our long-term marriage demonstrates we have reached a workable relationship between caregiving and care-receiving. Joe remains committed, and I certainly need him.
THINGS I LEARNED
Adapt
The name of the game! Adapting needed or desired tasks enables me to accomplish a surprising amount. Still, some things had to be done by others. I must ask for help when needed (and accept help when offered).
Plan
Planning and adapting are cousins. Sometimes, good planning negates the need to adapt. Warning: planning can drive your family crazy!
Pace
Pacing was critical. As an early doc said, “You have one cup of energy for the day. Use it sparingly or all at once, but when it’s gone, it’s gone for that day.” When I use it quickly, I hurt more. UP pacing—starting at a slow pace, then gradually doing more thus increasing strength—will not work for me. My weakness cannot be overcome.
Balance
I sought to balance relationships with family and close friends while taking care of my needs. Sometimes successfully.
Don’t worry what others think
A hard concept to learn. Explain, when appropriate. Ignore, if necessary. Understand when they don’t understand. Things I try to practice.
One day at a time
It eases tension. When I could still hike, our family climbed Mt. Lassen, 2 1/2 miles, 2500 feet elevation rise. Knowing I was growing weaker each year, I chose to go. Harder than expected, I could only put one foot in front of the other and ignore how far we still had to go. Sheer stubbornness and embarrassment at the thought of rescuers coming after me was all that kept me going. Sometimes, that’s how life is.
So …
Can you live a lifetime with mild to severe limitations? I did. You can, too—if you have to. But, do everything in your power to change whatever you can.
Thank you so much for being so open and honest I got so much out of this post and I appreciate it must have been hard to write
You’re right. It was much harder to write than I thought. There have been so many bad, hard things (physically) in my life, yet if someone asked me how my life was, I’d probably classify it as “Great!” Only God can do that.
Wow, 40 years. What an anniversary! Thanks for sharing your wisdom with us.
It just hit me a couple months ago. 40 years! I’m so glad we can’t know the future because I couldn’t have stood it if I’d known I’d live this long. However, living through it hasn’t been as bad as I would have thought. There have been compensations for the bad. Grandkids, for one. 🙂