Category Archives: Multiple Sclerosis

Battle of Perspectives

Every day as I wake, it seems a battle between two perspectives. I resent having to fight the same fight daily about how I will view my MS today. I am all for self awareness and introspection. I just hate having to send my mind down the same tract to the same emotional boxing match.

In the dark trunks, on the near side is Mr. MonSter. He fights the long fight, rarely going down and never going out. He reminds us the way to boil a frog in a pot with no lid is to warm the water slowly. Towards this end, he opens with jabs of slowly increasing pain. He waits for opportunities to exploit faults in memory to cause cracks in confidence and temperament. If he hit with all of his tools at once, he would be giving up the isolating feeling he brings when nobody believe his opponent is worse than they usually are. He’s always up for the full bout, and his strength only increases as the rounds progress.

In the insanely bright, hurt your eyes green trunks in the far corner is Mr. Perseverance. His fighting style is characterized by a belief in what is done despite being tired one day is the best indicator of what will be possible tomorrow and all of tomorrows’ tomorrows. While many who have fought Mr. MonSter have fought to conserve spoons full of energy to either win in the later rounds or subsequent matches, Mr. Perseverance believe in punching onward taking what opening present themselves now. He is a risk taker with confidence he will be able to withstand any counter punches, and as his name implies, he rarely gives up even in the face of high costs in the near future. His belief in new methods of recovery and increases in fitness allow him to fight ever on.

Who wins? Lately, Mr. Perseverance has won by decision, but the water is slowly getting warmer. Will Mr. Perseverance ever concede one battle to take the time to hop to another pot or will the MonSter win out in the end?

Tune in next time…and the time after that….and the time after that….

In the words of an early 80’s television show, “Same bat channel, same bat time…”

O spotted this bird on a walk around Burba Lake at Ft. Meade.  I bet it wouldn't be trapped in a pot of boiling water with no lid.  Will Mr. Perspective learn from Ali to "float like a butterfly and sting like a bee?"
O spotted this bird on a walk around Burba Lake at Ft. Meade. I bet it wouldn’t be trapped in a pot of boiling water with no lid. Will Mr. Perspective learn from Ali to “float like a butterfly and sting like a bee?”

Share

Double Rainbow Days

On some days, a single rainbow just doesn't say enough.  This day ordered a double.
On some days, a single rainbow just doesn’t say enough. This day ordered a double.

This past week, my family and I went to Jamaica, to FDR which is our favorite family resort (for what it worth, TripAdviser.com has had them as the top family destination in Jamaica for years). For a family with medically fragile children, this place is a life line. Their nannies take excellent care of the medical and non medical children, and the resort is the perfect size. It’s big enough the parents can do things without the kids and small enough parents and kids can find each other whenever needed. We went last year, and we could not wait to get back this year. It’s the land of double rainbows where the pots of gold are smiles and free moments with spouses.

We were a little worried when the passport request for K was denied 12 days before we were to leave. However, the Maryland Department Social Services (DSS) office in Baltimore city came through in spades. We called our worker when we got the package returned to us Saturday. Sunday she came to our house and picked up the package. Monday afternoon, she brought the package back to us with the requested paperwork signed by a judge and notarized and other paperwork approved by DSS lawyers to meet the requirements of the State Department’s letter refusing the first application. For all many rightly bemoan bureaucracy, Baltimore DSS did well by us to get the passport reapplication accomplished quickly.

When I look back, I cringe thinking how much K would have missed out. She had her own nanny on the trip, and she thrived. People were amazed after the first day whenever we said she had problems seeing. We all watched as the first day we had to tell her “step” whenever there was one upcoming, but she quickly memorized the place and took off. She loved the pools, the beach, and even the water-slide. Watching her go from scared of sand to crying whenever it was time to go back to the room was a joy. I have never seen her so happy.

As for the rest of us, we got what we wanted too. Whether it was A getting a group of adults (the nannies) to play Parcheesi, O getting to hunt hermit crabs and play Foosball, or J and I getting to have quiet dinners alone to reconnect, we all got a much needed break.

That’s not to say there weren’t bumps along the way. When are there not? I can not for the life of me explain why A loved the water slide on alternating days with fear being the dominant emotion every other day. I still have no idea from where our kids drew their limitless energy rejecting sleep half the nights there.

However, the good days were so good, and the ability to rest and relax let me enjoy physical activity levels I have not had in years. When a day can start pushing K on a 5k run through the hills followed by a longer bike ride after breakfast, then some thing is going well. To have both of those things not tire me out for the rest of the days activities is an awesome testament to the value of the workouts I do most days at work and the efficacy of Tysabri thus far in controlling the physical symptom progression of my MS.

I liked our date dinners on pier.  J and I rarely get time to go out alone.  Thank you FDR.
I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.

Share