Tuesday, July 28, 2015

One of My Blog Posts Is Featured on MS Connection

MS Connection Blog is administered by the National Multiple Sclerosis Society. They liked the guest blog post I did a few weeks ago at MyCounterpane and asked if they could re-post it at their website. MS Connection is in a whole other league from EnjoyingtheRide.com – huge readership. Of course, I agreed. Thanks again to Kate at MyCounterpane.com for making this happen.

The post has been running at MS Connection since last Wednesday and has 37 comments. This is more comments than I’ve ever had on a post of mine at EnjoyingtheRide.com. The piece was about how I’ve adapted to using ever more progressive mobility aides over the years.

Here are some sample comments:
“Maybe I should finally listen to what my wife has been saying for years and pick up a stylish cane.”
“Ty I am going to go get a cane. I too have resisted. Your letter made me feel better. So thank u sincerely.”
“Thank you so much, your story has really helped me. Am always fighting having to use any walking aids & end up feeling fatigued & frustrated. Really want my independence back, think time to get a powered chair or scooter. Thank you again.”
“Many thanks for writing. My wife fought every assistance aid with a supreme passion, often as it was too late to be of assistance. As her 24-7 caregiver, she so robbed herself of opportunities to more enjoy the life that gets disrupted by physical disability. I am very hopeful that your article will help other independence fighters. I salute your courage!”
“Ever since I was diagnosed with MS I have been frightened of using a wheelchair/scooter, but thanks to you I now see it as enabling rather than disabling. Thank you for writing this article.”
“Thank you so much for this article. My husband is dealing with these issues & questioning his self-worth. I read this to him & just pray it’s the encouragement he needs.”
And one with an appropriate dose of reality…
“I too, was resistant to the cane, the walker, the scooter and now the power chair. They help, but are far from easy…I thought I would be independent with my wheels. I’m not.”
I’m human, and I have an ego, so I don’t hate it when people shower me with praise. But it's even more meaningful when somebody tells me that I’ve made a difference, that I’ve helped someone in some way. Nothing feels better. This MS Connection experience has motivated me to finish my book and get it published. Maybe I can make a difference in more lives.

Tuesday, July 21, 2015

Preserving My Identity

I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished). 

How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.

Thursday, July 16, 2015

We Went Camping: Part Three of Three

It’s great campground entertainment to watch people crawl out of their tents or cabins in the morning. I call it the March of the Full Bladder. It’s largely a female thing, because men are more likely to cheat and use the woods in the middle of the night. A woman will emerge, groggy from a poor night’s sleep and partially blinded by the daylight. She will lean forward and stumble for the first few steps until her legs catch up. She won’t greet you or even make eye contact. She is on a mission. It resembles the Walk of Shame that young women endured when they snuck out of our college fraternity early in the morning and headed back to their dormitories. (This was unfair, because if one of my fraternity brothers walked in the opposite direction early in the morning, there was no shame involved – quite the opposite, in fact.)

Camping is a lot of work for everybody except me. There was often a buzz of activity, especially during set up, tear down, or mealtime. I couldn’t do anything to help, and no one expected me to. I felt like a King sitting on his throne, his wheeled throne, being waited on hand and foot and enjoying a life of leisure. But it wasn’t as much fun as I imagine being King would be.

I never know where to put by drink when sitting around the campfire. After several failed attempts, the team built a side table for me that was both stable and at a comfortable height. (The one pictured here was a failed attempt.)

We spent all day Saturday outdoors, and the heat got to me. About halfway through a scrumptious dinner of chicken, summer squash, zucchini, and corn on the cob, my arms and hands failed me, not unexpectedly. Several of us were engaged in a lively dinner discussion, so I tried to use a system of vague gestures and inaudible whispers to get Kim’s attention.

“What?” she asked.

“I need help,” I said while pointing at my plate.

“Help with what?”

“With my food.”

“Which food?” she asked a bit more loudly because the whispering wasn’t working.

Frustrated by Kim’s inability to read my mind, I blurted, “I need help with everything!” Our dinner companions stopped talking, which doubly frustrated me. I complained to Kim, “I tried to say that quietly so I wouldn’t interrupt the dinner conversation.” Within seconds, I felt terrible for being such an asshole, but Kim didn’t even seem to notice, and I’m not sure anyone else did either. Conversation resumed, and Kim helped me finish my meal. Damn heat.

We enjoyed our last evening around the campfire, going to bed only after gentle prodding by the campground “police” around midnight.

As Kim prepared to get me out of bed on Sunday morning, she complained of a strange odor in the far corner of the camp. Seconds later she gasped and threw a shirt on the floor. Kim is not a girly girl, mind you. She almost never cries out like that.

“What is it?” I asked.

“A dead mouse,” she screamed.

“A mouse crawled into your shirt and died?”

In a more calm voice, she answered, “It’s more likely that a certain cat at our house killed a mouse, and a certain dog buried the dead mouse in our suitcase while we were still packing on Thursday morning.”

“You’re not accusing Oreo and Phoebe of such a crime?”

“I am.”

I thought about it, and yeah, that’s what happened. Kim put on a different shirt and disposed of the mouse.

After Kim finished getting me up, I sat outside and witnessed the March of the Full Bladder again, and then I ate breakfast. It was time to pack for home, so another whirlwind of activity broke out around me while I reigned benevolently from my portable throne. Soon, my little kingdom looked as barren as when we had arrived, ready for the next round of campers.

A big thank you goes out to all five of my fellow adventurers. You took such good care of me. I wanted for nothing the entire weekend.

As we said our goodbyes to the rest of the group, I asked Kim, “I had fun this weekend, but it’s really up to you. Was all the work worth it?”

“It was worth it. I had a great time.”

“Maybe we’ll do it again?”

“Oh definitely.”

And there you have it.

Other posts in this series:
I'm Going Camping
We Went Camping: Part One
We Went Camping: Part Two

Wednesday, July 15, 2015

We Went Camping: Part Two

At 4 o’clock on Friday, we piled into our minivan and drove the fifteen minutes to Hampton Beach, one of those classic, east coast towns with a split personality.  Cheesy T-shirt shops and carnival style food stands from the 1950s are interspersed with modern resorts and hotels. One thing has remained constant over time, however. There’s a lot of sand and a lot of water in Hampton Beach.

We pulled into the Casino Ballroom parking lot, the venue for the Beach Boys concert we would attend later in the evening, and asked the attendant if there was any wheelchair accessible parking. “I’m sorry, all those spots are taken.”

Kim drove around the parking lot, looking for a space both well positioned for an exit after the concert and accessible for unloading me (maybe at the end of a row). We formed an ad hoc committee of five expert advisors to help Kim make the right parking decision. I’m certain she appreciated the suggestions and the constructive criticism. She tried out two or three spaces before she became fed up and parked in a spot nobody liked. After we piled out of the van and began to walk across the parking lot, we noticed five, big, beautiful, handicapped parking spots, all vacant and well positioned near the exit. The committee of advisors turned in unison and looked at Kim. She moved the van one more time. Stupid parking attendant.

After dinner and drinks, we explored the beach. Kim and I stayed off the sand because it looked a little soft for the iBot. On our way from the beach back to the music venue, we stopped at some shops. Kim told me that she liked a certain necklace, but would never consider spending the exorbitant sum of $58. I asked her to show it to me. She did, and I liked it. It took all my skills of persuasion, but I convinced her to purchase the necklace – a rare gift for herself.

Time for the Show

Six or seven years ago we attended a concert at the Casino Ballroom. After the show, we approached the wheelchair lift, only to find that there was a long line for it. “Let’s take the stairs down to the street,” I suggested to Kim. She agreed.

I positioned the iBot inches from the top step. Two employees rushed over. “Sir, what are you doing?”

“This is a stairclimbing wheelchair. Just step back and prepare to be astonished.”

One of the employees spoke to someone on his radio, then said, “I’m sorry Sir, but we can’t allow you to proceed. We’re not insured for that.”

“Don’t worry. We do this all the time. Please, just step out of the way.”

The employees gave up their attempt to stop us and asked, “Is there anything we can do to help?”

“Yes, hold on to these,” Kim said as she took off her high heels. She then guided me down the long staircase and out onto the sidewalk. Several employees and a group of spectators expressed their amazement. Kim and I played it cool on the outside, but on the inside we basked in the glory of our accomplishment.

This past Friday, as we approached the same venue, one of those employees from so many years ago came up to me and said, “I recognize you. You’re the one with a stairclimbing wheelchair.”

I recognized her too, and asked, “Would you be terribly disappointed if I took the wheelchair lift this time?”

“Of course not,” she said.

By the time I got up to the concert level, I noticed Kim already working on an usher. She pointed toward me, and he nodded. When I reached them, the usher said, “Follow me.”

Although we only had general admission tickets, he sat the six of us in the front row, stage left. This is usually how it goes for me at concerts – one of the silver linings of being a wheelchair user.

The Beach Boys played for about two and half hours, and it was an awesome show. The only way it could have been better is if they played for one and one-half hours and skipped all the filler songs that nobody knew. But, nevertheless, we enjoyed ourselves.

Once the concert was over we hustled out to the minivan and joined the 2500 or so fans leaving downtown Hampton Beach. Karen Cole volunteered to drive, and once again a committee of five expert advisors began advising. Feeling bad for Karen, I took charge and made an impassioned speech. “I appreciate that everyone has their opinions about which way Karen should go, but she and I have it under control. So shut the F up.” They did shut up until I told Karen to go the wrong way on a one-way street. The others pounced on my error and I lost the upper hand. The opinions flew in from every direction, but somehow Karen found her way out of Hampton Beach anyway.

We retired to bed as soon as we got back to the campground, which was close to midnight.

Tomorrow – the conclusion of our camping saga.

Other posts in this series:
I'm Going Camping
We Went Camping: Part One
We Went Camping: Part Three

Tuesday, July 14, 2015

We Went Camping: Part One

Kim and I arrived at Wakeda Campground in Hampton Falls, New Hampshire, around two o’clock on Thursday and started making ourselves at home in cabin number 21, one of three cabins we had reserved. About halfway through the process I offhandedly remarked that cabin 25 had a lot more shade. The weather forecast called for temperatures in the high 80s, and I’m super sensitive to heat. Kim agreed and moved everything down to cabin 25, without complaint.

Just as we finished settling in, the rest of our crew arrived – my brother Andy and his wife Karen, and another couple we had only met in passing once or twice over the years.

We enjoyed dinner and then a roaring campfire. It was all low key stuff. I encountered no particular challenges. The grounds were flat and hard, easily maneuverable in either of my wheelchairs. The transfer from my wheelchair to the bed in the camp went smoothly. I fell asleep within minutes. About an hour later, I woke up.

Although I can’t move my legs, my sensory nerve endings still work. I can feel everything. In this case, my buttocks and my tailbone informed me that they were not happy. The mattress was a piece of foam, insufficient for my needs. A healthy person can roll from sleeping on their left side to sleeping on their back, to sleeping on their right side, and make the best of a poor mattress situation. All I could do was suffer, or wake up Kim to help me adjust my position, which I did at least half a dozen times throughout the night. I estimate that I got two hours of sleep. Kim may have managed slightly more.

After a big breakfast on Friday morning, Kim and I set out to find the nearest Walmart, which was only a few miles away. Mattress toppers ranged in price from $7.88 to $140. We settled on a 1½ inch, queen-sized memory foam mattress cover for $38. We folded it in half so I had a 3-inch cushion to work with. The next two nights I slept as comfortably as I do at home.

The Biggest Challenge

Adapting. Overcoming obstacles. Taking risks. That’s what Kim and I are all about.

I’m not referring to accessibility issues like the one above. That’s child’s play. I’m talking about the courage and social skills it takes to spend a weekend with people you barely know.

About a month earlier, Andy and Karen found themselves in preliminary talks with both Kim and I and their friends David and Karen about a summer getaway. Everyone’s schedules being what they were, the second weekend in July became the focal point for each discussion. Andy and Karen made the bold decision to combine two worlds, to mix old friends with close family in a single weekend. They sold the idea to both us and the Coles, but everyone knew that the big risk takers were Andy and Karen. If they had miscalculated, if they had reached too far, the weekend could crash and burn, and everyone would blame them.

It’s not like we had no common ground. Four of us – David, Andy, Kim, and me – graduated from the same high school in Lincoln, Maine. All six of us attended the University of Maine. But Kim and I are a bit younger than the other four. Sitting around the campfire, David and I learned that not only did we belong to the same fraternity on campus, Phi Kappa Sigma, but we were each fraternity president during our junior years. We compared war stories from almost a decade apart. I would love to share some of those anecdotes about the inner workings of our secret society, but then I’d be obligated to kill you, and there are so many of you that it would become logistically impractical, so I’ll refrain.

If Andy and Karen were the biggest risk takers, then David and Karen were a close second. They agreed to spend a weekend with a couple they barely knew, one of whom had advanced multiple sclerosis. I don’t know what they thought about in the days leading up to our outing, but if I had been in their shoes I would have had lots of questions bouncing around in my head. Would the guy in the wheelchair be upbeat and engaging or unhappy and withdrawn? How would he interact with his wife/caregiver? How would everything work – eating, sleeping, riding in the car, etc.?

It would have been easy for the Coles to find an excuse not to join us that weekend, but they took a chance, and they deserve credit. Unless I read the situation incorrectly, the weekend didn't crash and burn, and everyone had a good time.

More tomorrow, including the Beach Boys concert…

Other posts in this series:
I'm Going Camping
We Went Camping: Part Two
We Went Camping: Part Three

Tuesday, July 7, 2015

I’m Going Camping

You heard me.

For many years, this was our favorite summer activity, but Kim and I have not been camping since 2008.

My brother and sister-in-law, Andy and Karen, and friends David and Karen will join us. We found a campground in southern New Hampshire that has very basic cabins. We reserved three in a row. Each one has set of bunk beds and a queen-size bed, electricity, and almost nothing else (no running water or toilets, although there are public bathrooms and showers nearby).  Kim and I made a visit there a few weeks ago to assess the situation. It might work.

We will bring a Hoyer style lift to get me in and out of bed, transfer me to the commode, and switch me from wheelchair to wheelchair. We'll bring both the iBot and Invacare wheelchairs, and we'll bring our portable commode since there is no way to get me on and off the public toilets.

We leave on Thursday and return on Sunday. Over that time, I won’t shower, but we have ways to keep me from getting too ripe.

For sleeping, we'll bring a wedge pillow that slightly elevates my upper body, pillows to keep my feet elevated, and a device to keep the blankets off my feet. To have access with the Hoyer lift, we will rotate the bed ninety degrees. We already tried that out. I hope the mattress is not too uncomfortable. I envision a nap each afternoon in my air-conditioned minivan.

Our 5-foot portable ramp will get me from ground level up to the floor level of the camp. We already tried that out too.

Other than those things, it should be a fairly normal weekend for us. What could possibly go wrong?

Our campground is near a music venue that we’ve gone to several times – the Casino Ballroom in Hampton Beach, New Hampshire. After we made reservations at the campground, I wondered who might be playing the Casino Ballroom that weekend. Turns out it’s a little band called the Beach Boys. You may have heard of them. Now, the six of us are going to the Beach Boys Friday night.

What are my biggest concerns? I’m worried about sleeping, and I’m worried about heat exhaustion. Probably those things will go well and some unexpected events will prove challenging. One thing you can count on – I’ll give you a full report right here next week.

And for those sensible people out there who don’t think I should be announcing vacation plans on the internet, fear not. We’ll still have three people and my ferocious dog guarding our home.

Other posts in this series:
We Went Camping: Part One
We Went Camping: Part Two
We Went Camping: Part Three