Don't Take Life For Granted
Last updated: October 2022
Do you remember a time when you awakened from a late afternoon nap and it was dusk? You needed to close the blinds, but it hit you suddenly that not only were home alone, you knew it'd be next to impossible for your legs to get you around the house and even if so, your hands were too weak to turn the wand on the blinds to close them?
Beginning ‘the search' for help
How about when there was a family gathering or event that you were so very excited to attend! But then enters the downside... The ‘driver’ of the house is away and though your vehicle has hand controls, fatigue creates a challenge to drive yourself. To be ‘safe’, you leave your car parked and begin ‘thesearch’: Who’s not busy, who's going that way or agrees to go out of their way, how can you fit yourself into the schedule of someone else, who’s vehicle isn't too small for your wheelchair... or too high for you to get into, etc.
Has there ever been an instance when you needed to run an errand or two, but a ‘quick run’ to the store was just not in the cards for you. Why? Because getting ready, out the door, to and in the car takes the same effort and ability as working 40 hours with only an hour of sleep for the week? It’s definitely not happenin’. And then you realize there's a choice...kind of: Wait until another day for the little errand OR try to see who might be willing to donate their time to give a hand.
Relying on the same people
Might you recall any times when “no”, “that won't suit”, “Wish I could, but…”, “did you check with…” are your chief answers to your already reluctantly asked (because you feel burdensome as it is) questions “Could you take me…” or “Can you go get…”, etc. And then you’re left with no choice but to rely on asking the one(s) who are your ‘regular’ go-to’s, They would be the “Willing Doers” in your life. Without them, you’d find yourself in quite a state a lot of the time.
I most certainly remember personal experiences of all of the above. If you’ve been lucky, you have not had those or similar experiences.
Don't take life for granted.
I never pictured this
For someone who's always been happily independent, I must say that I never pictured ‘this’ day for me. I never thought about me suffering the frustration, pain, worry, sadness, of Multiple Sclerosis - a non-fatal, but extremely chronic disease. A chronic disease that’d deprive me of self-reliance leaving me dependent on others to get to and fro, for personal care... even to take my daughter swimming or to the mall. In my 40’s.. while surrounded by friends and family within the same age group, watching them living busy lives - working, vacationing, doing this and that. I’m not...or rather, I can't.
Don't take life for granted.
Taking a moment to vent
Don't judge me for putting my usual optimism and positivity in my pocket for a bit. Trust me, it’s definitely still a part of me because it's crucial for my survival. It’s just that the journey through life with a chronic disease is not an easy one. This particular moment is me allowing myself a little vent. This particular moment is me sending a message:
Do not take life for granted.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: