Tuesday, April 26, 2016

Singing in the Shower

Despite my overwhelming medical problems, I don’t exhibit any symptoms of depression. Shouldn’t I, though? I sometimes wonder if there’s something wrong with me – if I am in denial, or if I’m just crazy. I keep on the lookout for despair, expecting to see it around the next corner, but thankfully I never do.

We have a radio in our shower, and I often find myself singing along to the oldies station.
Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today...
This singing happens organically, spontaneously. I don’t plan it. Is it an expression of my inner happiness, or is it something I subconsciously do to induce happiness? Is it a cause or an effect? Doesn’t matter.
My child arrived just the other day
He came to the world in the usual way
But there were planes to catch, and bills to pay
He learned to walk while I was away
And he was talking 'fore I knew it, and as he grew
He'd say, "I'm gonna be like you, dad
You know I'm gonna be like you.…" 
Sometimes I realize that I’m singing and reflect upon it. I become happier still about the fact that I remain capable of experiencing spontaneous joy despite my circumstances. Strong medicine, this singing in the shower.
Aruba, Jamaica, ooh I wanna take you to
Bermuda, Bahama, come on pretty mama
Key Largo Montego, baby why don't we go
Ooh I wanna take you down to
Kokomo, we'll get there fast and then we'll take it slow
That's where we wanna go, way down in Kokomo.…
As long as these old songs continue to have this effect on me, I think I’m in great shape. If I stop singing, that’s when I’ll worry. 
Every time I look in the mirror
All these lines on my face getting clearer
The past is gone
It goes by, like dusk to dawn
Isn't that the way
Everybody's got their dues in life to pay… 
I am the world’s worst singer. For that reason, you’ll never hear me sing unless it's in the shower, in which case I may feel compelled to ask you what the hell you’re doing in my shower. 

Wednesday, April 20, 2016

My Year on Biotin

If you’ve read this blog, you know the drill. I have an incurable disease. Cause unknown. There is no treatment. Fifteen years in, I require a power wheelchair to get around, and I’m completely dependent on others, yada yada yada.

Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here's what I’ve tried so far:

Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.

Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.

Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.

Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.

Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.

CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.

Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.

In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:

Biotin (2015 – ): A pill. Used for one year. Didn’t help.

This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.

Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.

Or, I may stop at any moment. I don’t know. I just don’t know.

Tuesday, April 12, 2016

In a Previous Life …

Marco and I go way back. We met as freshmen chemical engineering students at the University of Maine in 1982 and have been close ever since. I worked hard and earned top grades over those four years. Marco worked harder and got even higher grades. Later, we were both employed as engineers at Lincoln Pulp and Paper. I put in long hours, and my career progressed. Marco put in longer hours, and he became the mill manager. Today, he is a VP at an international paper company, and I couldn’t be happier for him.

Marco and I see each other infrequently these days. But we recently met for breakfast at Q Street Diner, a throwback, greasy spoon diner maybe 300 yards from my house.

The conversation could have gone in either of two directions. We might have reminisced about all the fun we had in our 20s and 30s snowmobiling or hanging out with our friends in Lincoln. But on this day, the discussion bent toward business, something he’s still involved in and I’m not.

Marco is overseeing the expansion of a mill in Woodland, Maine – an investment of well over $100 million. He is one of the most knowledgeable pulp and paper minds around. Me? Although I lived that industry for 13 years, I hadn’t had an opportunity to talk pulp and paper much since I left the Lincoln mill 16 years ago. Over breakfast we began to discuss the basics of his project and his new position. I proceeded cautiously at first, unsure of my ability to carry on an in-depth conversation on these subjects. Then the strangest thing happened. A part of my brain that had been ignored for so long suddenly awoke. Neurons that had lain dormant for years began to fire, feeding me tidbits of information I would never have imagined I still possessed.

I asked probing questions and used technical jargon. It all came rushing back, and I was thrilled with my powers of recall.

“This is fun. I haven’t talked pulp and paper in so long,” I said.

“You’re doing a pretty good job of it,” he replied.

What a satisfying breakfast. To top things off, Marco picked up the tab.

In a previous life, I defined myself in large part by the work I performed. Because of MS, that identity is gone. But I don’t lament the loss. What good would that do? I still have a meaningful life, and I’m determined to make the most of it.

Wednesday, April 6, 2016

My Pet Peeves

I didn't write an essay this week, so I thought I would roll out one of my favorite old posts. In this lighthearted video, I address a few of my  pet peeves. Enjoy.

If you are receiving this post via email, click here to watch the video.

Tuesday, March 29, 2016

Problem Solving

Sleeping is a pain in my ass, literally. At least it was until a few days ago.

For a big guy like me, spending 16 hours a day sitting on my butt requires a good wheelchair seating system, which I have, thanks in large part to my occupational therapist, Maren. For those other eight hours a day, my memory foam mattress always provided a comfortable night’s sleep, until it didn’t.

It’s a lot to ask of a mattress, to keep someone comfortable when that person doesn't move his butt even an inch all night long. Typically, people in my situation employ sophisticated solutions, and sophisticated solutions cost money. If the pain in my butt had manifested itself as an active bedsore, then I could have leaned on my insurance company. But I decided to act proactively, unlike my insurance company, and get an advanced mattress system in place now.

The state-of-the-art is an air-filled mattress with a controller that continuously varies the air pressure. If my butt can’t move, then I need the mattress to move instead. That costs about $2500. I researched my options and found an alternative. A few manufacturers make a mattress overlay, which is several inches thick and has this same variable air pressure control. I wondered how much that might cost. Maybe $500? A reasonable guess, but no. How about $50, 4½ stars, 331 reviews on Amazon? Click here to see it.

I ordered one, and because I have Amazon Prime, it arrived two days later. I’ve been using it for a few days now, and the pain in my ass is gone. I can barely feel the pressure changes going on underneath me, and I would characterize it as more soothing than annoying.

And the kicker? It’s portable. So I’ll be bringing this puppy with me whenever I travel. Heck, I’ll probably order a second one just so it will be more convenient when we pack up.

Sometimes, I stumble upon highly effective, low-cost solutions. It’s rare, but it feels good in more ways than one.

Some folks might consider situations like this and say, “Look at the crap I have to go through.” I prefer to consider situations like this and say, “Look how proficient we've become at solving problems.”

Wednesday, March 23, 2016

The Art of the Deal

Everybody loves to get a good deal. Satisfaction might come from the shopping or negotiating process, or it might be the result that matters, or both. I’m just as happy whether I find a deal or Kim finds one for me. She isn’t that way, however. Her satisfaction comes from the hunt and the kill. The feast afterwards? She could take it or leave it.

The most common phrase Kim’s father has uttered to me over the past 36 years has been, “Mitchell, can I ask you a question?” He never just asks the question. He always asks if he can ask, even if the asking is rhetorical.

But it’s his second most common phrase that is relevant here: “Mitchell, guess how much I paid for these shoes?” Or something along those lines. So, Kim comes by it naturally.

In the summer of 2015, Kim bought a few items at thrift stores and sold them on eBay – mostly pocketbooks and shoes, but a little bit of everything. I shook my head. How could this be fun for anyone, I wondered.

She met with some success. It felt good, so she did it more frequently. By October, I asked her, “How much money are you making at this?”

“I don’t know. I’m sure I’m making something.”

“Wait a minute. You don’t know how much money you’re making?”

“I’m not doing it for the money. I’m just having fun.”

“Okay. I’m going to start tracking your finances for you, and I’ll produce a report every month analyzing your little business.” This was my idea of fun.

“Knock yourself out.”

I determined that Kim was making hundreds of dollars a month of clear profit. Today, she has over 250 items listed on eBay, which means she has over 250 items of inventory in our house. She makes 60 to 80 sales per month, which means 60 to 80 times per month she wraps something up, places it on her kitchen scale, prints her own postage label, affixes the label to the package, and drops it off at the nearby post office. And it means 60 to 80 times per month she purchases something at a thrift store which is worth much more than what she paid. She gets a kick both from buying items at a bargain and from selling them at a significant profit.

I was worried about Kim. She spent so much time taking care of me and molding the minds of those fifth through eighth graders at her middle school. She didn’t have a hobby that she was comfortable spending significant time on until now. As a bonus, this hobby of hers doesn’t cost money. It makes money. We decided to use her profits only for fun items or activities. So far we’ve purchased a robotic vacuum cleaner, which eliminates one of her less fun chores. We went on a trip to Boston for dinner, a show, and a night in a hotel. We gambled (and lost) and spent two nights at Foxwoods. In April, we’re taking in a Red Sox game and spending another night at an upscale hotel in Boston.

Works for me. Works for Kim.

To see Kim’s eBay store, click here.

Sunday, March 13, 2016

Book Update – It’s Done

The Apple Didn’t Fall, my memoir about growing up with a disabled mother only to become disabled myself, is complete at 48 chapters, 342 pages, 93397 words.

I'm currently exploring publishing options, of which there are many. This could take a while. I’ll update you when I figure out how I'm going to get this on bookshelves.

In the process of editing and re-editing the manuscript, I cut some perfectly good scenes and chapters for a variety of reasons. I kept everything that I deleted, however, in case I wanted to bring it back someday or use it in my next project. In The Apple Didn’t Fall, I skimmed over the period between my youth and when MS started to show up in my late 30s. I had fun summarizing everything that happened during those years in a single, humorous chapter. Alas, that mini-chapter didn’t survive editing, but I thought I would share it with you here. Enjoy.

Chapter 8 – Thirteen Years

Because I need to move this story along, I will summarize the next thirteen years, from the time I was twenty-two until the time I was thirty-five, in 500 words or less. Even more remarkably, I will accomplish this by using only dialogue and age markers.
Age 22
Kim: “I do.”
Mitch: “I do.”
Kim: “Why did you take a job in Cleveland?"
Mitch: “Because there were no jobs in Detroit?”
Mitch: “How do you like the apartment I chose for us?”
Kim: “On the 21st floor? I married an idiot.”
Age 23
Kim, at my company outing: “Who wants to get some drinks afterward?”
All the people in Cleveland that we met because of Kim, and who remain our lifelong friends: “You guys are fun, especially Kim.”
Age 24
Kim: “Living in Cleveland for two years has been great, but let’s move back to the east coast.”
Mitch: “I found this tiny paper mill I can work at in Northwestern Vermont. Close enough?”
Kim: “Do they have bars in Vermont?”
Mitch: “Burlington is a college town, so yes, they have tons of them."
Kim: “Count me in."
Three months after moving, still age 24
Kim: “I’m pregnant.”
Mitch: “Here are the car keys. You’re the designated driver.”
Nine months later, age 25
Kim: “Ouch. That hurt.”
Mitch: “She is beautiful. Let’s name her Amy.”
Eleven days later, still age 25
Mitch: “I thought I might move back to our hometown of Lincoln, Maine when I was 100 years old, not when I was 25.”
Kim: “Can you believe you are going to work as a chemical engineer at the same paper mill where your grandfather and your father worked before you?”
Mitch: “You’re right. You did marry an idiot. But at least our parents will be thrilled that we’re moving home.”
Three months later, and still age 25
Mitch: “Congratulations on your first paycheck as a full-fledged teacher. How much money did you earn?”
Kim: “Bite me.”
Mitch: “I probably deserved that.”
Age 28
Kim: “Ouch. That hurt again.”
Mitch: “He is beautiful. Let’s name him Zachary.”
Kim: “That is such a bold and unusual name. Dare we?”
Mitch: “At least he’ll be a one-of-a-kind name. He’ll be unique.”
Age 29
Mitch: “Ouch. That hurt."
Kim: “After what I went through in childbirth, you dare complain about a vasectomy?"
Mitch: “I totally would’ve gone through childbirth for you if I could have.”
Kim: “You are full of shit.”
Age 31
Kim: “Congratulations on getting your MBA. How much of a raise did the mill give you?”
Mitch: “Bite me.”
Kim: “I probably deserved that.”
Age 35
Mitch: “How much bigger will your paycheck be next year, now that you have your master’s degree, and you’re a guidance counselor instead of a teacher?”
Kim: “Quite a bit, actually. Look at these numbers.”
Mitch: “Nice. You definitely deserve that.”
Kim: “Do these pants make me look fat?”
Mitch: “I would love to answer that question, but we have passed the 500-word limit.”
Kim: “Lucky bastard.”

Wednesday, March 9, 2016

Physician-Assisted Dying – Part Four – Final Thoughts

Click here to read the other posts in this series first.

I’ve come to accept that someday I will die. Probably. Unless… no, definitely. Someday I will definitely die.

It may be my choice, or it may not. If it is, I wonder how I’ll know for sure. I suppose when life is all drudgery and pain, and nothing can induce the occasional moment of joy or happiness, and there’s no hope of recovery, then it's time.  I’m a long way from there. May never get there.

In the first three parts of this series, I’ve laid out the case for legalizing physician-assisted dying. It won’t come without some risk. It won’t be perfect. But the benefits are so much greater than the drawbacks. It is an inherent human right to choose your time and method of death, and doctors should be authorized to assist when certain criteria have been met.

A handful of countries including Switzerland, the Netherlands, and Belgium have some form of physician-assisted dying. In the United States, Oregon, Vermont, Washington, and California have Death with Dignity laws. In my state of Maine, a Death with Dignity bill passed the House in 2015 but failed in the Senate by one vote. Supporters are looking to reintroduce the bill in 2017.

I have a particular interest one aspect of these laws. If I ever get to the point where physician-assisted dying makes sense for me, I wouldn’t meet the criteria in some of these jurisdictions. Often, a doctor must assert that the patient’s expected lifespan is less than some amount, usually six months. People with slow, degenerative diseases might find life unbearable for many years, not just a few months. I don’t consider physician-assisted dying laws suitable if they have one of these lifespan restrictions in place.

My friend and fellow blogger, The Wheelchair Kamikaze, recently summarized the progressive MS situation in one of his posts:

“In my many conversations with other people with Progressive MS, I’ve found that most have formulated some sort of escape plan, some in only vague terms but others down to the last detail... most of the people who have related their thoughts and plans with me find them not self-defeating but rather self-empowering, bracing them to suck it up and fight on secure in the knowledge that if the fight becomes just too brutal and the climb too steep they’ve given themselves permission to call it a life. And in that there is no shame.”

Let’s take end-of-life planning out of the shadows. No one should have to starve themselves, ask their friends or relatives to assist them, suffer an unnecessarily excruciating death, or worst of all experience a botched suicide attempt. We need physician-assisted dying laws that are thoughtful and inclusive.

What can you do to help?

Ideally, everyone who reads this will become an activist in the cause. Here is a link to a list of supporting organizations.

I recommend this one: https://www.deathwithdignity.org/

For those who don’t want to become activists, the next best outcome is that readers at least quietly, privately empathize with an individual’s right to choose when and how to die.

If you remain opposed to the legalization of physician-assisted dying, I hope you now accept that those of us in favor of it come from a place of compassion, protection, and respect. If that's all these blog posts have accomplished, our time here has not been wasted.

Click here for Physician-Assisted Dying – Part Three – The Arguments in Favor of Legalization

Tuesday, March 8, 2016

Physician-Assisted Dying – Part Three – The Arguments in Favor of Legalization

Can we justify physicians becoming involved in the hastening of a patient’s death? The Supreme Court of Canada thinks so. In a 2015 TED talk, Grace Pastine discusses the issue of physician-assisted dying in Canada. If you have a few minutes, it’s worth watching.

Pastine describes three principles that matter deeply to people with serious medical conditions:

Compassion – Nobody should be forced to suffer horrible, cruel, deaths. When all other avenues have been exhausted, people should be able to die painlessly and with compassion.

Protection – Sometimes people take their own lives prematurely because if they wait too long they lose the means to do so. They can become trapped in their bodies, in an unstoppable dying process. Individuals should be protected from having to make these types of decisions. This also applies to caregivers. They need legal protection in the event that they assist their loved ones to end their lives.

Respect – Every individual should have the right to make personal choices based on their beliefs. They should be free to decide how much suffering to endure and how to say goodbye. And they shouldn’t have to figure out a way to end their own lives. They should be able to utilize the services of a physician so death occurs in a reliable, humane manner.

Legalization plays a role in addition to helping patients die.  Simply knowing that they have this choice brings peace of mind in their final days. My friend Brent lives in the State of Washington, where Death with Dignity laws exist. He is a hospice volunteer and said this:

I estimate that over the years I have had 20 patients who have obtained DWD drugs. Of those patients, only one opted to use the drugs.”

Brent went on to describe his reaction when that patient passed:

My experience with this patient was different, because of communications. I had tried to reach the patient (27-year-old with terminal cancer) to schedule a visit a couple of times in the early part of the week and then got the death notice on Thursday morning. Initially I had a feeling of ‘why didn't he tell me’ - an emotion I had obviously never felt with other patients. I quickly checked that emotion at my door because I realized it was a selfish one. As an independent caregiver I realized his decision must have been a difficult one, and family and friends deserved notification, but I did not.”

In Part Four I’ll give my final thoughts on this issue.

Click here for Physician-Assisted Dying – Part Two – The Arguments Against Legalization

Click here for Physician-Assisted Dying – Part Four – Final Thoughts

Monday, March 7, 2016

Physician-Assisted Dying – Part Two – The Arguments Against Legalization

I’ve changed my terminology from physician-assisted suicide to physician-assisted dying. The latter term seems to carry less baggage.

To be clear, this discussion is about public policy – should physician-assisted dying be legalized? This is not about the personal decision individuals might make about whether to exercise this option.

Here are the most common arguments against legalizing physician-assisted dying, and my thoughts on each one.

Any Form of Suicide is Against God’s Will

In most faith traditions, orchestrating your own death is considered a sin. Only God gives life or takes life away.

Because the United States is a secular democracy, not a theocracy, this argument applies only to personal decision making. It has no place in public policy making.

Legalizing Assisted Dying Would Invite Abuse – the Slippery Slope Argument

There’s a disability rights group, called Not Dead Yet, that actively opposes the legalization of assisted dying, precisely because many of them would be potential candidates. They fear legalization would lead to pressure on individuals within the disabled community and other vulnerable groups to agree to be euthanized when that’s not their preference. Some folks even fear that legalized, physician-assisted death could come to be viewed as a cost-effective way to treat the terminally ill.

This is a legitimate concern, but not a reason to disqualify physician-assisted dying. Slippery slope arguments are problematic. According to yourlogicalfallacyis.com, these arguments take the form of “You say that if we allow A to happen, then Z will eventually happen too, therefore A should not happen.”

The website goes on to say, “The problem with this reasoning is that it avoids engaging with the issue at hand, and instead shifts attention to extreme hypotheticals. Because no proof is presented to show that such extreme hypotheticals will in fact occur, this fallacy has the form of an appeal to emotion fallacy by leveraging fear. In effect, the argument at hand is unfairly tainted by unsubstantiated conjecture.”

Slippery slope arguments can be used to build the checks and balances into a system, but not to argue against the system itself.

Advances in Palliative Care Make Assisted Dying Unnecessary

Hospice facilities have become better at what they do. Death can be made comfortable and painless.

This is true some of the time, but not all of the time. There are too many cases when it was impossible to provide a relatively comfortable and dignified natural death.

The Logistics are too Messy

When does the assisted death option legally come into play? What if the patient’s mental state is unclear? What provisions would we need in order to weed out unscrupulous family members who are just tired of taking care of grandma, and are pressuring her? Which medical methods are acceptable? Must a patient be in imminent danger of death, or is quality of life sufficient reason for euthanasia? Wherever society draws the lines, the first person on the other side of the line will cry “foul.”

Yes, the logistics are complicated, but can be managed. If rule makers are compassionate and open-minded, systems can be developed that fairly address the needs of most individuals. There will always be someone just on the other side of the line whenever public policy is made. This is not a justification to stop making public policy.

What If They Find a Cure the Day after I Die?

What a horrible shame it would be if people practiced physician-assisted dying when they didn’t need to. Medical advancements occur every day. How can anyone be sure that their situation is hopeless?

This is another legitimate concern, but one of personal choice, not public policy. Patients would have to accept this risk. But it’s a small risk. Instances of unforeseen medical advancement are rare. Most ailments that would lead to assisted death have existed for some time, and will continue to exist.

Another version of this argument is, “What if an individual would have gone into remission had they not been euthanized?” Checks and balances can be put in place so that only patients who are unlikely to experience remission, and only people with diseases that aren’t likely to be cured in the near future will be allowed to undergo physician-assisted dying.

In my next post I’ll discuss the arguments for legalizing physician-assisted dying, also referred to as Death with Dignity.

Click here for Physician-Assisted Dying – Part One – An Uplifting Subject?

Click here for Physician-Assisted Dying – Part Three – The Arguments in Favor of Legalization