I deny thee for the lie you pretend to be.
It’s often easy to think we have time. It’s so tempting to say “I can’t wait till tomorrow when I will be able to…” There’s always tomorrow…right up until there isn’t.
These sayings sound trite, so petty. They seem childish once one is confronted with a progressive disease like MS. Even with relapsing remitting MS, I can’t be sure tomorrow will see an easing of symptoms. With every relapse, there is a new, usually worse baseline. Even without a flare, the baseline isn’t level. We all age, and MS ages me faster. Still, I think MS has made me more aware than ever of the good days, even the good hours, minutes and moments. Tomorrow is an illusion whose only real value is contained in all the nows which bring it to exist.
This past week, I was lucky enough to be pointed towards another blogger with MS. Unfortunately, I was pointed to his blog after he passed. He had an amazing way of putting things bluntly with eloquence. My favorite quote came from my favorite of his posts, one on slaying dragons, and it goes right to the heart of making the best of what you can do today.
“Even the healthiest of us have battles throughout the day. We all have our own stories, and as insidious as it may appear to the world, nobody seems to go unscathed. Humor can truly ease the situation. Learn to laugh at yourself a little. I need you all to do me this favor. The next time “running” to the store, “jumping” in to the shower, “grabbing” lunch for the kids, or even “preparing” for the day becomes in anyway a pain in your ass, it is necessary to perform one of two options. Either thank God profusely for the ability and fact you can actually perform and accomplish these tasks without trepidation or consciousness, or take my approach, get your head on straight, make a few jokes, and SLAY YOUR DRAGON! There are no other options.”
(My favorite moments of this week on the next page)
My favorite nows of this week were playing “Go Fish” and Tic Tac Toe with A and watching O concentrate at Tae Kwon Do. To know them is to know how far they each have come to enjoy those simple day to day things. For A, the simple games of logic weren’t easy. To get her to concentrate on winning and not just avoiding losses is a huge change of perspective. She was moving beyond just getting by preferring a tie to a win because then both people are not sad (note, neither being excited for winning either). This was no small change even though it sounds small. For O, concentration is not his long suit, and watching him stand in line without goofing off or running headlong into the mirror wall. With K, I loved watching her run up the sidewalks and down the sidewalks of our block stopping to inspect the plant with colored leaves. How can a little girl who can see only 2 feet move with such confidence where everything is unknown? Awe inspiring is the only explanation I have. Progress rarely seemed so rewarding as this week. These moments make all the pain and tiredness seem but trifles. Live now.
As my kids grow, I think of the quote from Samuel Johnson, “What we hope ever to do with ease we must learn first to do with diligence.”
Follow up on Seasonality of MS:
I got an email response to my request for data from PatientsLikeMe.com. I had written them asking for access to their data on MS symptoms to look for a seasonal effect using programs I used for work to look for seasonal adjustment factors. Their research department wrote me back saying they had looked for a seasonality of flares and found no significance to the results. Note the “significance” is a reference to statistical significance not a denial of meaning. They also confirmed pharmaceutical companies already use suspected seasonality to make their drug tests look better, and said they thought the idea of looking for a seasonality of symptom reporting could be an interesting research idea. I wrote them back offering to run data through my work’s SAS programs using ARIMA modeling. I’m happy to hear they have looked at seasonality in the past, and if symptoms prove to be better reported than “flares” it will tell other users of data from patients like me which types of data are better reported. The knowledge of how data is self reported is potentially far more useful than even the results of this one idea. The implications could give more value to the results of other studies of self reported symptoms across other medical conditions.
Now after all the talk of disbelief in tomorrow, I must retire. Today has been packed, and tomorrow will I hope be even more so.
From following morning, the story of the divine donuts:
On the way to work, I was exhausted. Something about flying 2 days in a row and spending a day giving presentations left my get up and go states away. So I decided to stop for coffee on the way to work, something I rarely do. While getting coffee, I saw Crispy Creme donuts and thought they looked too good to pass up. Since I was splurging anyway, I got a donut too. Sadly, as I was opening the car door, I dropped the donut with my stupid, clumsy tired MS hands. I chuckled to myself, “OK God, I can take a hint. I’m not meant to eat a donut.”
When I got to work, this is what had been put out for the office to share:
I ate my donut giving many thanks to the lady who brought them and a separate silent thanks mixed with a good laugh…Okay, I ate 2.
Laughter is good for the soul, even if the inspiring donuts may not be as good for the body.