Monday, August 31, 2015

I Walk in My Wheelchair

265395004_8ce0692442_oReaders of this blog know I have a wheelchair that does things other chairs won’t. It can raise me up on two wheels to the height of a standing person, allow me to climb stairs, and more. But this post isn’t about the iBot.

This post is about semantics, the interesting kind (yes, such a thing exists).

Someone might ask me, “Are we going to drive to the restaurant or walk, um, er, I mean wheel, or is it roll?”

This issue can take a simple question and turn it into an awkward moment. Until now, I didn’t have a consistent response. Sometimes I said walk is okay, and other times I favored more precise terminology (I am an engineer after all). But I don’t need that in my life. I don’t need people tiptoeing around me worrying about saying the wrong thing. I need normalcy. I need to make myself comfortable to be around, not challenging to be around.

I have decided that, going forward, when I don’t have someone drive me from point A to point B, I’ll say that I walk. In almost every context, it’s irrelevant whether I use my legs or my wheelchair to get where I’m going.

In rare instances, I'll still make the distinction. “Mitch, when did you stop walking and start using a wheelchair?”

I won’t be a purist and make a foolish statement like, “I’ve decided to say that I’m still walking.” No, I will answer, “It was a gradual process, around 2007 or 2008.”

The sad truth is that not every person I encounter will have read this blog post. So, I’ll be gentle in the future when they ask, “Are we going to drive, walk, wheel, or roll…?”

I'll respond with something like, “Walk is good. I just say walk.” And I’ll smile, and we’ll move on to more interesting conversation.

After many years of uncertainty about this issue, it feels good to have made a decision. The opposite of drive is walk. I will no longer dance around the question of walking.

I walk in my wheelchair.

To be clear, I hate dancing. Don’t ask me to dance in my wheelchair. If you do, I may turn and run.

Tuesday, August 18, 2015

A Colonoscopy for a Wheelchair User

In the United States, for your 50th birthday present they give you a dose of happy drugs, roll you on your side, and slide a probe up your butt. It’s not as fun as it sounds, though, because the day before that you aren’t allowed to eat any food, and you experience the soupiest diarrhea of your life.

But I didn’t accept my 50th birthday present. I wasn’t comfortable with the logistics, given that I’m a wheelchair user. As my 52nd birthday approached, however, I reconsidered and thought it might be important to get a colonoscopy. I’ve heard that colon cancer sucks, and that catching it early improves your survival rate dramatically. For me, the problem was the preparation required the day before the procedure. Patients have to drink a laxative concoction which induces sudden and uncontrollable bowel movements (or BMs, as my mother, a real lady, used to call them). Patients stay close to the toilet to avoid accidents. I have an overhead lift system to get me from wheelchair to toilet, and the transfer process takes 30 to 60 seconds. Hence the problem.

The obvious solution would be for me to sit on the toilet for the entire 3 to 5 hours of, let’s call it vigorous bowel activity. Because I no longer can shift my weight around to remain comfortable, I have an elaborate seating system on my wheelchair, with various air chambers and cushions, and the ability to recline my upper body and raise my feet. Even this system barely allows me to get through the day without a sore butt. I dreaded the thought of sitting on the toilet seat for five hours.

But I knew what I had to do. I scheduled a colonoscopy for last Friday morning. The procedure called for me to take a laxative pill at noon on Thursday and then start drinking the laxative cocktail at 4 PM. I sat on the toilet at 3 PM. It didn’t take long before my butt ached, so we became innovative. First, we added two small pillows between me and the seat. That helped for about half an hour. Then we tried two big pillows. That helped for another half hour. Then Kim ran to the corner drugstore and bought one of those inflatable donuts that women use after they have a baby. That got me through the rest of the five-hour ordeal, but it wasn’t fun.

I reported to Maine Medical Center at 7:00 AM on Friday for a 7:30 procedure, having had nothing to eat since 6:00 AM on Thursday morning, and nothing to drink since 9:00 PM Thursday night. Kim and a couple of the nurses transferred me from my wheelchair to the hospital bed. One nurse introduced herself, and I thought she said her name was Harley. “No, it’s Carly, but it would be so much cooler if it was Harley.” The other nurses and Kim and I agreed that for the rest of my stay she would be Harley, and she was.

Harley asked me a ton of medical and personal questions, including, “How tall are you?”

“About four feet, six inches,” I responded.

“I can see what kind of day this is going to be,” she said with a smile.

Next, Harley tried to start an IV, with no success. Two other nurses poked me a total of four other times, until I had five holes in me, but still no IV started. Each nurse apologized profusely. I explained that I am a difficult prick, so to speak, even when I’m properly hydrated. Then they brought in the heavy artillery. I can’t remember her name, but she said she usually worked “downstairs.” After a few minutes, she was able to thread the catheter in my vein and establish an IV.

Quite late now for my 7:30 colonoscopy, they wheeled me into the procedure room. Two nurses and the doctor rolled me over on my side to expose my, shall we say, point of entry. They hung a bag of the sedative solution on my IV stand but couldn’t get it to flow into my vein. I asked one of the nurses (not Harley) if the IV was working. “We will make it work,” she said with determination. So, instead of a constant drip throughout the procedure, they force-fed two syringes of the drug directly into my IV port, and it worked.

I slept through the probe insertion. I woke up midway through the removal, which is when they do the inspection and polyp harvesting. I felt no discomfort. As I watched on the screen, the doctor inched the probe out and removed several polyps. A little wire would emerge from the probe and lasso the polyp. The doctor would then draw the wire back into the probe and pinch the polyp off the wall of the colon. Interesting stuff. He told me that nothing appeared cancerous, but I’ll get a pathologist’s report in a few days. Because I didn’t have a clean colonoscopy, I’ll have to go back in 3 to 5 years instead of the standard 10 years.

Why am I sharing this story with you? If you are a disabled person, this serves as a reminder that even though you may have a serious condition, like MS, for example, you still need to consider your overall health and well-being, and you need to get the screenings recommended for people your age.

If you’re not a disabled person, and you are avoiding screenings like a colonoscopy, I hope this post makes you feel guilty. Given that I made it through this procedure, certainly you can.

In closing, if you live in the United States, or somewhere else where colonoscopies are recommended at the half century mark, I wish you a very shitty 50th birthday, and I mean that in the nicest possible way.

Wednesday, August 12, 2015

Dave and Stephanie’s Wedding, Part Two of Two

During the initial planning for the wedding on Sunday night, Dave said, “I only want the ten people or so who are here tonight to be at the wedding, and I want all of you wearing nothing nicer than what you have on right now.”

We mostly had on shorts and T-shirts. I asked, “Can I upgrade to khakis?”

“No khakis!”

Dave was so, so wrong.

As the week went on, the number of people who would be attending grew closer to thirty, and the budget kept getting bumped up. It became clear there would not only be khakis but a few suits and ties, not to mention evening dresses and high heels (note that the spikes on certain high heels fit nicely in the gap between the planks on our wooden deck). Stephanie’s boss called and arranged to purchase a case of champagne for the reception. We’ll never drink twelve bottles of expensive champagne, I thought.

I was so, so wrong, thanks mostly to Barbara and Marci.

Kim and Ann arranged for food, beer and wine, hard alcohol, champagne flutes (glass not plastic), flowers, decorations, cupcakes (in lieu of a wedding cake), tables, and table settings. They even bought a trellis and assembled it. I asked my daughter Amy, who is skilled with a camera, to be the wedding photographer and videographer. She enlisted her fiancĂ© Nick’s help, and the pictures and video came out great.

Stephanie learned that her mother, her sister Jolee, and her two best friends would be coming to the wedding. On Thursday, I got a secret text from her other sister, Christy, letting me know that she would be a surprise guest.

Dave and Stephanie arrived back in South Portland about noon on Friday, and the three of us made the short walk to City Hall to get their wedding license. While waiting, we had a nice conversation with one of the city counselors, and when Dave and Stephanie made it to the front of the line, the city clerk couldn’t have been more pleasant. They laughed about how their experience would have been different waiting in line for a wedding license at City Hall in Las Vegas.

On Friday night, we had party number two, a rehearsal dinner but without the rehearsal. Throughout the day on Saturday, Kim and Ann put together the final touches, and at 6 o’clock everyone gathered in our small backyard.

Dave sang the processional song, Love Minus Zero/No Limit by Bob Dylan, a tune he refers to as “the greatest love song of all time.” A couple days before the wedding, Amy came up with the idea of purchasing the Bob Dylan album with that song on it, and having guests sign the album cover instead of a guestbook. After Stephanie’s mother walked her down the aisle, my brother Tom began the official ceremony. Dave and Stephanie each gave a little talk about their journey together, and then Dave picked up his guitar again.

Stephanie asked, “Oh, there are more songs?”

“You didn’t know about this song?” Dave teased.

As Dave played, Christy walked in, microphone in hand. After hugs and tears, Christy sang the song 1000 Years, accompanied by Dave on the guitar. The rest of the short ceremony went off beautifully, and at the end Tom introduced Mr. and Mrs. David and Stephanie King for the first time. Party number three commenced immediately, and it lasted until two in the morning.

As best man, I made a toast. See the video, below. If you are receiving this via email please go to the original blog post to watch the video.


video

Dave and Stephanie couldn’t stop thanking those who planned and executed the wedding, especially Kim and Ann, and they deserve it. But none of this would have happened if not for Dave and Stephanie having the audacity to recognize a great idea and the guts to act on it. There were a hundred reasons not to get married this way, but they focused instead on the positives. One of those positives, a relatively minor one in the grand scheme of things, was my ability to take part in their wedding, which may not have happened if they had married in Vegas. Because of their spontaneity, daring, and deep commitment to one another, we experienced an unforgettable event – the time our friends from Vegas flew to Maine for a quickie wedding.

You want bonus footage, you say? Okay, here it is. I gave a second toast, a traditional toast from our fraternity days, and some of the brothers in attendance joined me. Also, I’ve included parts of the heartfelt and energetic toast by Eric Peavey, Stephanie’s Man of Honor. Enjoy.

video

Click here for part one.

Tuesday, August 11, 2015

Dave and Stephanie’s Wedding, Part One of Two

I thought I had the rest of our summer all planned out. Normal stuff – Red Sox baseball game, class reunion, art show in the local park. It was all detailed in my summer planning spreadsheet. Then my friend Dave flew into town and, well, things got interesting.

I’ve written about Dave here before. But if you’re new to this blog, what’s important to know is that he’s my childhood best friend and has lived most of his adult life in Las Vegas. Although he earned an electrical engineering degree, he has made a name for himself in Vegas as a musician. Dave visits Maine most summers, making his way around the state to see as many people as he can.

He gave me a few weeks’ notice before flying to Maine in late July of this year. “We’ll just play it by ear when I got there,” he said. This was typical, and I expected no further commitment.

Dave and I met in first grade and immediately became best friends. Because I lived up on the hill and he lived down on the lake it took me five minutes to ride my bike to his house but fifteen minutes to get back home. He had a pool table in his basement and a lake in his backyard, so we stayed at his house more than mine, but he was no stranger to my family. His mom and dad, Gail and Wayne, became like second parents to me, and I still think of them that way.

Later, Gail and Wayne sold the lake house and bought an old farmhouse up on the hill, still a bike ride away. But soon enough we had our driver’s licenses. In high school, Dave’s interest in music began to dominate his free time. He tried to teach me the guitar, so I could jam with him and his friends, but he became frustrated with my apparent tone deafness. Thus ended my brief flirtation with playing in garage bands.

He spent more and more time with the musical types, but our friendship didn’t suffer. We still shared a special connection and found opportunities to hang out together – and get in trouble together. We were college roommates the first semester, and then fraternity brothers for the rest of our college years. Again, at the fraternity we gravitated toward different groups. Or I should say he spent most of his time with certain brothers, and I spent most of my time with Kim. But again, I wouldn’t characterize it as a weakening of our friendship.

Shortly after college he and his parents moved to Las Vegas. Our paths couldn’t have been more different. He led a single life as a musician in Sin City. I worked for corporations as an engineer, married my high school sweetheart, and lived in rural northern Maine, and later south coastal Maine. But, because of my visits to Las Vegas and his visits to Maine, and several phone calls throughout the year, we remained close. To this day, when we get together, we pick up where we left off, as if nothing ever changed. Of course, sometimes things have changed.

John was another good friend growing up, essentially the third leg of our stool. He lived halfway up the hill when we were kids, and today he and his wife Ann live only a few miles from Kim and me in South Portland. Below is a picture of me, John, and Dave after our last high school football game.



Until recently, Dave had been a lifelong bachelor, although he had a tendency toward serial monogamy. I grew close to several of his serious girlfriends, only to see them disappear, one after the other.

On this trip to Maine, Dave brought his live-in girlfriend of several years, Stephanie. Kim and I had met Stephanie both here and in Las Vegas, and we adored her. We tried to keep our emotional distance from Stephanie, with little success, because we knew we would lose her at some point down the road. When Dave and Stephanie arrived in Maine a few weeks ago, we had a little get together with about ten people at our house on Sunday night. At this party, Stephanie revealed that Dave had recently proposed to her, and that she had accepted. When we found out they had no specific wedding plans, and, in fact, doubted they would have a formal wedding, Kim and Ann went to work on Dave and Stephanie. Why not have a wedding, right here in our backyard, before you go home to Las Vegas?

Everyone loved the idea, but it was late at night, and more than a little alcohol had been consumed. I suggested to Stephanie that, in order to seal the deal, in order to make it so Dave couldn’t change his mind in the morning, she should call her two sisters and give them the good news. With Dave’s blessing, she did. Nevertheless, I was nervous the next morning until we heard from the couple that their wedding plans were still on.

During the planning party, I had offered up my brother, Tom, who is a notary public, to officiate the wedding. I confirmed with him on Monday morning that he was willing and able to do that. I called South Portland City Hall to find out the legalities of an out-of-state couple getting married by the end of the week. Turns out there was no waiting period, but because Stephanie was previously married she needed to produce an original, stamped divorce decree from the court that granted her divorce. She made a call and had the document Fedexed to me.

Dave and Stephanie set out the next morning, Monday, for a tour of the state, with plans to return on Friday in preparation for a Saturday wedding. Beginning Monday morning, Kim and Ann went to work on the wedding. It was a crazy week.

We are thankful to Dave and Stephanie for giving us this opportunity, to allow our little oasis in the city to be their wedding venue. Sometimes the impromptu events, the ideas conceived among friends over beers, turn out to be the best. Sometimes going “off spreadsheet” is justified, even inspired. This was one of those times.

Click here for part two.

Tuesday, August 4, 2015

FRUSTRATION!!!

I’m referring to what you feel when your routine tasks don’t go smoothly – hitting your thumb with a hammer, dropping something on the floor, or being unable to button your pants (maybe because of MS). I’m not talking about frustration with your spouse, your boss, or Obama.

Everyone has a different threshold for this type of thing. Some folks keep their cool most of the time while others express their annoyance all too easily. I fall somewhere in the middle (I think).

I was never a saint. I remember once when I was a young father, as I piddled around in my basement workshop I became modestly frustrated with myself. Zach, my two-year-old, was watching me, so I bit my tongue. He picked up on my suppressed frustration, however, and offered, “Jesus Christ, Daddy, huh? Jesus Christ.” Apparently I hadn’t bitten my tongue enough in the past.

Having MS adds a whole new layer of frustration, for both Kim and me. Sometimes I can’t complete the simplest tasks, or I can no longer complete tasks I was able to in the recent past. If I expressed my frustration an average of five times a day before MS, I bet it’s now ten times a day, and sometimes quite colorfully. Similarly, with all the caregiving duties that Kim has taken on, I’ve noticed her tendency to express frustration has grown over the years.

I need your help on this one. My questions are:

Do people with MS and their caregivers have license to express their frustration more than healthy people do?

Is it better to keep our frustrations unexpressed, so as to make being around us more pleasant, or is this suppression of emotion unhealthy?