Advocacy: healthcare reform

A letter to my representatives:

Request: Healthcare reform that provides a real safety net (a government option)

“…the moral test of Government is how that Government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.”
—Hubert H. Humphrey

Greetings from the shadows.

After living with an incurable, debilitating disease (multiple sclerosis) for 28 years, I offer these opinions from my wheelchair:

• Quality healthcare should be available to everyone, even people with health problems.
  (Insurers should not be able to deny coverage for pre-existing conditions or discontinue coverage after a potentially-expensive diagnosis.)


• Quality healthcare should be affordable
  
  (Non-elective medical expenses should be no more than 20% of a family's monthly income. When they are, the government should help families pay.)


• Quality healthcare includes home health: care attendants who provide help with activities of daily living for those unable to do them.


• Healthcare case managers* should help doctors and patients coordinate care and find the most cost-effective solutions.


• Reward people for good health habits, but don't punish them for bad luck.
  
  (I have never smoked or been drunk, high, or overweight, but I am sick.)

[* I am aware that care coordination has not fared well in some studies, but having specialists and GPs work together with a long-term treatment plan (which mine don't) makes so much economic and medical sense to me!]

How it is for me now:

My husband lifts me out of bed and into my wheelchair (insurance helped pay for it) and then from my wheelchair to the toilet, where I pee and dress. He lifts me back into the chair. We each go to work. I drive our handicap-accessible van (we paid out-of-pocket). One of us takes our 11-year-old to her day camp. At about six o'clock, we all meet back at home and my husband helps me to the bathroom again. I sit in wet “disposable underwear” (adult diapers) in my wheelchair for 6 to 8 hours each day (depending on how my neurologically-challenged bladder is doing). We can't afford to hire anyone to help me to the bathroom during the day. (Home health agencies have two or four hour minimums.) Insurance will not help us because they do not pay for “custodial care.” A nurse involved with my care is concerned that I will develop pressure sores.

With our two incomes—and spending about $1,000 a month on our high-deductible insurance plan—we make ends meet.

What I fear:

The company that employs my husband is for sale. It is possible the buyer will take the intellectual property (patents) and close the company. No health insurance. The “disease modifying drug” (Avonex) I take costs over $2,200 per month. I would discontinue that. I am due for a refill to my baclofen ITB pump (spasticity medication) in January. That will probably cost $600. If I skip that, I will be in constant pain.

I don't spend much time on the fear road. It gets too big too fast. What happens if my husband has a medical emergency? We don't have any backup for him. What happens when I am no longer able to work? Apparently, even if one does get approved for disability benefits, it takes a couple years before any benefits are received. How will we get by?

What I hope:

I imagine a world where my case manager helps me sort through medical options the various specialists are recommending by weighing expense against long-term outcomes. I dream of getting some help so that my husband doesn't have to do everything (and can start saying yes to travel requests by his employer). I long for a life where everyone in the US can rely on a healthcare safety net that allows access to the care we need.

Being able to count on having healthcare, I could refocus my energies on raising my child and contributing to my community, rather than wondering if I am too much of a burden on my family.

Specifically:

• A "government option" should be a part of any healthcare reform passed by Congress.


• In order to insure all Americans, I would support a plan which increases taxes for middle and upper income families. (That includes mine… we make about $110,000 a year.)


• Healthcare “rationing” doesn't worry me. I would welcome being told a surgery or medication would not be an option because it wasn't cost effective in the “big picture.” [I am on the wrong side of this argument, according to most disability advocates.]


• End-of-life counseling makes sense to me, as long as final decisions are kept between individuals and their doctors and suicide is not made attractive through failures in care.
  

A healthcare system driven by “market forces” leaves the most vulnerable of us behind. Please do what you can to make quality health care available to all Americans.

Cyborg Serenity (Baclofen Pump, part 3)

On June 30, 2009 I became a cyborg when a surgeon installed a baclofen pump into my abdomen.

[As I have explained elsewhere, (Baclofen Pump, parts 1 and 2) a baclofen pump is a device designed to deliver anti-spasticity medication directly into my spinal column.]

Wikipedia defines a cyborg as "an organism that has both artificial and natural systems." Thinking about becoming a cyborg made the impending operation seem more like an adventure than a nuisance, though memories of Star Trek's Borg continuum did give me pause.

It wasn't until after the operation that I looked at the Wikipedia entry and discovered that my thinking was not that creative. Wikipedia suggests "a human fitted with a heart pacemaker or an insulin pump might be considered a cyborg..." That being the case, we cyborgs are everywhere.

In the last month, the pump has been reprogrammed twice to adjust the dosage of medication. I confess I take a certain joy in it. The nurse practitioner holds her gizmo against my belly and presses some buttons. The alteration is instant and painless. How lovely it would be if other changes in my body(and my life) were as easy.

My post-pump body is significantly different than the body I had two months ago. It is not, alas, my pre-spasticity body. I had fantasies—and I knew that's what they were—that I might be able to transfer independently after the pump was installed. Instead, I am more dependent. Chances are, I will never be able to get up and dressed by myself again.

Emotionally adjusting to this loss has been surprisingly easy. I am reminded of the differences between "giving in" and "giving up." No amount of effort on my part will change the reality. I have to surrender to it. On the other hand, I am still here. As Richard Bach wrote in Illusions, "Here is a test to find whether your mission on earth is finished: If you're alive, it isn't." I am here, so I am invited to grow and explore, to listen and contribute.

I am dropped into a pool of serenity. This is my new body. This is my new life. My job, as always, is to find the gift in it.

A Reminder from a Brave Knight

About ten days ago I met a brave knight.

He approached me and introduced himself: "I am Aaron," he said. "I am a brave knight. I live in a palace."

Aaron had dark hair and glasses. Looking at him, as I sat in my wheelchair, we were about eye level.

"I can tell you're brave," I told him, "Because you came to talk with me. A lot of people are afraid of the wheelchair."

Aaron nodded, a serious expression on his face. He asked me why I use the chair and whether I can drive and cook. He was impressed with the way I can make my chair go up and down. That was worth calling his mother over so she could see it too.

She was anxious. "Has he been appropriate?" she asked. I reassured her that I appreciated his curiosity and bravery.

Years ago, in a writing class, I was given the assignment to walk through a neighborhood remembering what I was like when I was a child. The world transformed. The possibility of magic was around every corner. Nothing was predictable...in the best way.

In two days, I am scheduled for surgery: installation of a baclofen pump. I have never had surgery before and I'm a bit scared. My MS has been worsening fairly steadily for 15 years. I am not expecting great things from the next phase of my life.

When I was growing up, I had a poster on my wall with a quote from Cervantes: "Too much sanity may be madness and the maddest of all, to see life as it is and not as it should be."

The brave knight Aaron has reminded me that I can choose to live another way. I can choose to believe in magic, in possibility, in life as it should be.

Claiming my True Identity

Terry Pratchett has written one of my favorite characters: a failed wizard named Rincewind. Rincewind can't correctly spell wizard and, most of the time, can't do any magic. (A Great Spell has taken up residence in his mind, refusing any other spells entrance...you gotta read the books.) Still, he IS a wizard; he claims that as his identity, regardless of what other people might think.

In much the same way, I am an artist. I have only sold a few paintings. I self-published my book, Dancing with Monsters (not, I pridefully point out, because it was rejected but because I have the patience of a gnat and wanted to hold it in my hands rather than schlep it to publishing houses). Like Rincewind, reality seems to disagree with me. I find comfort, however, in the assertion of the great MythBuster-philosopher, Adam Savage: "I reject your reality and substitute my own."

I was worn out by weeks spent in the nasty bowels of medical recommendation and social service bafflement. There, I am a patient, a person with disability, a supplicant to the labyrinthine God of Benefits. I realized I had to think about—and do—something else. I needed to return to my center, practice my identity: I needed to make some art.

Even that idea comes with extra baggage of fear these days. For several years, my ability to use my hands has been decreasing. My left hand is strong, but it shakes and has never been very coordinated. My right hand and arm are weak. Earlier this year, I passed a milestone: the paintings I did for Lent were created using my left hand as much as my right. I felt as if there were a stop watch counting down the amount of time I would be able to make art.

I find inspiration in the work of Henri Matisse who, when he started using a wheelchair, shifted his art from painting to paper cut outs. Because painting was too physically rigorous, he found another way.

When I first started painting, it changed the way I looked at the world. Instead of just seeing a tree, I would notice the colors in the bark and the leaves and wonder what paints to use to mix those colors. I would think about what movements of the brush I would need to make to communicate the textures in front of me. The world became a magical puzzle and I love seeing the world that way.

Here in eastern Minnesota, we have been in near drought conditions. I looked at the sky. The sky that day moved from a light blue at the horizon to a deep blue right above me. It was like a clear, crisp, sustained note—a crystal chime. I sang back to it. I didn't have time, that day, to respond with an image. I did remember, though, and that working on the computer allows me to paint with light.

For several days, I looked at the sky and try to memorize what I saw. Finally, the weekend came and I had time to play with images and colors. I created "Five Skies."




It felt good to be making gratuitous art again.

Not too long ago, exhausted by the media harping on the bad economic news, I put some CDs in my car player. I was listening to Sweet Honey in the Rock. One of the things I love about that group is the rich texture they create with their voices. Thinking about that, I remembered that texture speaks to me. I want to touch things.

The clear blue sky, though, doesn't have a texture. It has depth. My digital drawings weren't capturing that depth.

I came back about a week later and made some refinements:



I don't know if the changes are even visible to the casual observer, but I felt better about the piece after making them.

When I updated my website to add the new sketch, I said I was working on "Five Series of Five." As soon as the words were out of my mouth, I started envisioning what the next five would be. (This time, I am definitely going to get to play with texture!)

Looking at the world through artist eyes, I feel interested and hopeful. Those days of sky gazing taught me that the seeing may be enough. If my hands and arms fail me completely and all I can do is watch and imagine, that will do.

I will be a maker as long as I can be. I will be an artist as long as I live.

Reset, Restart, Focus or Saved by Cheese Curls

Lately, I have caught myself being jealous of my computer software. "Microsoft Word has encountered a problem and needs to close." I wish I could close every time I encountered a problem. Instead, I slog onward,trying to soldier past all of my problems. I have felt myself stretch thin and thinner. The problems seem to weigh more and more, pressing me down until I am a smear. Finally, something gave.

I have been trying for weeks to figure out how to get some home health help. Advertising for a PCA through the Metropolitan Center for Independent Living hasn't worked, possibly because I don't live on an easy bus route and/or because I don't need enough hours of help. Market rate is about $20 an hour for a minimum of four hours. If I paid that, I would be spending my entire income on the help. I make too much for any of the programs to which I have been referred. Should I move? Should I quit my job? Would it "help" to get divorced? Investigating all of this has been time-consuming and maddening.

Two things helped. First,a friend of mine suggested that reviewing my "core values" would make any decisions easier. Second, in a totally immature response to my towering anger over the way "the system" works, I decided to stop eating. If "the system" wasn't going to help me, I would literally take my marbles and go home. My family (after a certain amount of grief) would be better off. No more living their lives around my limitations. No more sacrificing their financial health on my behalf. (A recent study found that multiple sclerosis is one of the most expensive diseases one can have.) My determination to starve myself to death lasted about two hours and then Ralph opened a package of cheese curls. "I will just have one or two," I thought. Of course I ate a handful. In no time, I had decided that any resolution so easily undone by cheese curls was not destined for success.

A quick trip through the history of this blog and it's obvious my life has become focused around playing defense against the medical and financial repercussions of my illness. This is not my core value! This is not what I want to be about!

I decided to use my computer software as a role model: I shut down. I kept up appearances. I kept going to work. I did church tasks. I provided transportation to my daughter. Underneath, though, I was waiting.

After time spent in Overwhelm, I purposely moved into Incubation. Now I am out.

I have chosen for my life to be about the creative process. I will not give that up, not for the disease, not for the system. That is my core value. My life and this blog will focus on understanding every part of my life as creative process.

A new beginning.

Medical Update: Baclofen Pump (part 2)

[View Baclofen Pump Part 1]

I spent April 14 in the hospital having the baclofen trial. Physical therapists visited me first, assigning numbers and measurements to the spasticity in my legs and arms. Then a doctor (and team)injected baclofen into my spine.

The spinal injection was the scariest part for me. In 1981, I had a spinal tap and myelogram to diagnose my MS. The injection site somehow didn't get closed. For several days thereafter, I threw up every time I lifted my head. It felt like my brain was scraping against my skull. The nurses this time warned me of the possibility of what they called a "spinal headache." The injection itself was not a big deal. (They do topical anesthetic first.) The next hour, waiting to see if the spinal headache developed, was the scary part.

Happily, it didn't.

The rehab doctor checked me about an hour after the injection and I was still very stiff. She told me it was early days and went away again. The physical therapists and doctor returned to check me two more times. At the height of its effect, the baclofen made it so that my legs were very easy to bend and move around. (Not for me to move them, because the MS damage has limited those signals.)

A representative of Medtronic stopped into my hospital room to answer any questions I had about the pump.

The main point of the trial was to see if my body responds to the baclofen, and it did.

I have decided to go ahead with the baclofen pump surgery. (To be scheduled sometime in the future.) I have confidence that I will be in less pain and will be able to sleep better. I don't know that, overall, it will make our lives easier. It's impossible to predict how hard transfers will be when we don't have my stiff legs on which to pivot.

At the moment, my legs are so stiff that I don't know that anyone who isn't as strong as my husband could help me transfer. We have to figure out how to get him some backup and making it possible for someone else to do the job seems like a first step.

Medical Update: Baclofen Pump (part 1)

I get a fair amount of e-mail about my "Botox bladder miracles" post. It is from other people who are considering having the same treatment. Describing medical adventures is a strange way to make online friends, but it's also rewarding. It is one of the ways I can be of service in this little strange life I lead.

Next Tuesday, I am due to have a test to see if baclofen will ease my spasticity when it is injected into my spinal column. It is the penultimate step toward getting a Baclofen Pump.

My rehab doctor and the nurse practitioner who works with her have both remarked that my level of spasticity is one of the highest they've seen. I am usually happy to excel at something; this is an exception. The best way Ralph and I have found to get my legs to bend is to stand me on them and lean the back of my knees against something until the eventual collapse. That would be on days when my legs have decided to extensor, rather than flexor, spasm. Every now and then we have a flexor day. Those are worse for me because I'm afraid my weight, dangling with my arms wrapped around Ralph's neck, is going to totally wreck him.

I have my feet strapped to my wheelchair foot rests with Velcro ties to keep them from kicking. I wear my wheelchair seat belt all the time. Without those two precautions, I would spasm right out of my chair.

Last week we took delivery of a Hoyer lift, which now stands like some truly ugly sculpture near the door of our living room. It will fit into the bathroom, but I'm not sure how we will manage to use it. The fact that we haven't used it yet leads me to suspect it will not be our favorite option.

The nurse practitioner asked me what I hoped to get out of having a baclofen pump. I've recognized this as a trick question: she was checking for realistic expectations. I told her I hope to be dancing down the hallway, but reassured her in the same breath that I know that won't happen. My dearest hope is that I may be able to transfer independently again. I'm afraid that is about as likely as the dancing scenario. More likely, I will be in less pain and spend less time and energy fighting involuntary movements of my body.

The first step in this process was to try to combat the spasticity with increased dosages of oral baclofen. At the doctor's advice, I slowly increased my baclofen dose until I was taking 80 mg a day. We didn't notice a difference in the level of spasticity, but I did feel sleepy and stupid. I slowly tapered down. At too low a dosage, I started noticing that leg spasms would jerk me away from my desk (and my mouse) a couple times a day. I was also waking up more often during the night. I have settled on 10 mg three times a day and 20 mg before bed.

There was another medication we could have tried, but the rehab doc was as unimpressed as I was with my body's response to the oral baclofen. We skipped that experiment and are heading on to the intrathecal test.

[View Baclofen Pump Part 2]