Do not panic. I am only referring to doing little/big things I used to do before Multiple Sclerosis moved beyond just a diagnosis to a daily challenge of events.
The title above comes from the movie "Ghost," and refers to my inability to accept the reality that changes need to be made to my life. Whoopi Goldberg said those words in frustration when Patrick Swayze refused to give up trying to reconnect and protect his girlfriend. And I agree with Mr. Swayze's determination.
First, I admit to being stubborn. I have my life. I have worked to earn it and keep it. Driving, OVER. Work, OVER. Walking without cane or walker, OVER.
Our home is quirky. The master bedroom is downstairs, which is nice when one has problems with stairs.
However, to arrive at our bedroom or the closest bathroom, you must go up a couple of tiled stairs. I have done this for 3 years, and fallen about 6 times going up or down.
Let us be realistic, changes need to be made if possible. I have fought this for over 6 months since the change was first recommended.
Then my new rehab team paid the house an initial visit. Standard review, change the entry to bedroom, go to different bathroom and on it goes.
Of course I ignored this salient advice.
If you want to get things accomplished, call my wife. She is wonderful, the light of my life. And whatever she says goes or gets done. My wife has wanted these subtle changes for my safety/better living situation. I have hit the “snooze button” and delayed the change.
Then I screwed up. My new rehab people called and asked for my wife’s phone number. I am a trusting, gullible soul. I failed to ask why they wanted it. Hum this next sentence to the old “dragnet theme”: DUMB DE DUMB DUMB.
That evening my wife arrived home and said that she had called the contractor and the new door was going to happen next week.
So where does, “You are hanging on to a life that does not want you” fit? I hate change (despite moving to 17 addresses in 18 years). Renovation is a vision thing. I have only once really seen the renovation of all the houses we have owned because we bought the house knowing it was a “fixer-upper.”
I love our home and I did not want to change it to make it more disability friendly. Admittedly, I should have relented earlier.
But I was holding on to my prior life.
I will fight a wheel chair to it is beyond an obvious necessity. I drove beyond what I should have. I worked too long.
My past life is screaming to give it up. Get real! I love my life in whatever form it takes. Love my wife, children and animals. The house is an accessory. I know this, but I can get attached to things. Our home, this laptop, my cell phone, television, MP3 and the list goes on.
But those are unimportant in the reality of life.
I should let go of what was and move on.
I need to make things as best as possible in my situation.
But I still miss walking unassisted. I miss walking the dog. Playing with the children.
I strive based on goals. When my CCSVI surgeon’s was checking me to see if I was appropriate for the procedure, they asked me for my goals. I had three.
- Less fatigue
- Walk better
- Dance at my daughter’s wedding. She is 12 years old, so other methods may allow this to happen.
I admit the last one is somewhat manipulative. I know that is a long-term goal, but that does not mean I do not see it as a prayed for goal. Time is on our side, but the clock will evaporate as I wait for extensive improvements or a cure.
But I will hold onto this life and these dreams. Quitting is not an option.
A moment about my new rehab group. They are different. Instead of physical therapy, it is more holistic look to physical, mediation, yoga and mental rehab.
Little improvements have occurred since I started. I am dressing easier. I am touch less fatigued. And I have eaten with my right hand.
The last one seems the smallest as I type it. But I have been right handed since I can remember. The left had did very little versus the right. And I realized a few months ago I started eating left handed. Uguh.
This weekend I realized I was eating right handed.
Nice.
Subtle improvements, but these are important to me.
Thank you for reading. I appreciate your time.
Power to the people.
Power to the cure.