Sunday, December 21, 2008

Holy Pesistence

This blog has a dual function, which sometimes makes it hard to write. I'm trying to document the process of living with increasing disability. That has a practical aspect: symptoms, management of symptoms, society's supports and lack thereof. There is also the interior aspects: being a thinking and feeling person on this journey. if I were a better writer, perhaps I could blend these gracefully. Today, at least, I'm going to rely on headings.

The practical blow-by-blow

In late November I made a series of phone calls aimed at getting a personal care assistant (PCA) so someone could help me with a transfer in the middle of the day. I called my County Human Services Department, the disability linkage line, and my local Center for Independent Living (MCIL).

The county social worker was primarily interested in getting me into a program that might help me pay for a PCA. She suggested that I call another social worker who handles the MA-EPD program. I did and left a message and have heard nothing since.

I exchanged a series of voice and e-mails with folks at the MCIL and visited there last week. It was the most encouraging thing I've done in the last few months.

Centers for Independent living were started in the 70s part of the disability rights movement. The idea was that people with disabilities should be able to participate in public life as much as possible and be the directors of their own care.

The MCIL has a program that helps people hire and manage their own PCAs. The woman who runs the program described what they do and was helpful in letting me know what my next steps should be.

There are of course challenges. Getting on MA-EDP is a bit complicated, but MCIL has advocates who will help me work my way through the system. if I want to try to pay privately, MCIL will help me find and hire a PCA. The finding would be easier if I lived on a bus line and wanted more hours. It all makes perfect sense, but it's a bit daunting.

The inside story

Getting advice about what my next steps might be was part of what encouraged me about my visit to MCIL, but there was a deeper satisfaction that has taken me a while to identify: they accepted me as I am.

Part of the dance is that I want to be as physically healthy as I can be, but I have to realize that the disease is at work. The physical therapist was trying to make me better. He was trying to do what he could to restore lost function. Bless his heart. We had to try, but that opens me to grief and disappointment and feelings of not having done it right. The folks at MCIL didn't ask for me to be any different. They accepted my description of what was going on, gave me some stories about how other people have dealt with similar situations, and offered their support. It was such a relief to leave there feeling like there is a road forward, other people have traveled it and I do not have to be alone.

It is bitterly cold out here and snowed 5 inches last night, so I decided not to go to church this morning. This means that I don't know what my faith community has named the last advent candle. I suggested to my family that we think of our own name for it. (My rascally housemates have suggested that we name it Fred.) This morning, after a pain filled night (spasticity), I decided that, for me, the candle will be named "persistence." It's not as poetic as the usual hope and faith and love, but it is a gift I need to nurture these days.

It was certainly part of the Christmas story: a desert journey on a donkey, finding a place to I'm heading into the holidays trying to practice holy persistence.

Friday, December 5, 2008


I was crabby at the doctor for not sending me to physical therapy. I was hoping that going would help a feel better. So I kind of forced the doctor into prescribing it. As it turns out, the doctor was right.

Physical therapists seem to be positive thinkers (nature or nurture? ). My PT was no exception. My first visit was wonderfully encouraging. We talked about regaining use of my left leg. Failing that, we wondered if I might be able to transfer using my right leg. Failing that, we talked about the possibility of a brace helping to stabilize one of my legs to make it possible to transfer. We spent the next month exploring those possibilities.

While the PT kept his hopeful attitude to the end, suggesting I could take the brace home to try to make it work even though we had no luck at the therapy office. But, as we crossed each possibility off the list, his positivity seemed a bit more forced. He apologized before I left, and I reassured him that even he could not accomplish the impossible. Sometimes, if a body won't, it won't.

Life has changed. The speed of change has been a bit shocking. The “good old days” were the beginning of October.

I am less upset than I might have expected. If I had given up immediately, if the physical therapist had given up immediately, I think I would be more distressed. Having experimented with different options and having lived in this changed body for a few more weeks have helped the adjustment. I was noticing yesterday that Ralph and I are learning what we have to do to get me and my body washed and dressed in the morning. We understand more about what works and doesn't work and vary our techniques to fit the spasticity level of the day.

So I am living through another cycle: the frustration and panic of Overwhelm, the falsely courageous veneer I wear during Incubation, and now the beginnings of Reconciliation. That word is so perfect for me. It combines the idea of being reconciled to the change that is taking place as well as reconciling with my changed body. That is the work I have in front of me right now.

There have been—and will be—many tears, but a measure of peace is returning.

Wednesday, November 19, 2008

Not Dead Yet

Last time I saw my neurologist, he suggested I try Tysabri. I have been using Avonex for about 10 years. Both are "disease-modifying drugs" for MS.

I chose Avonex because it is a once-per-week injection. The day after my injection, I always have flu-like symptoms: I feel tired and weak, like I'm under water. There are other medications that require more frequent injections. Doing the shot more frequently (and perhaps feeling crummy more frequently) has never had a strong appeal for me, even though some doctors think Avonex is not the most effective drug.

All the disease modifying drugs have the promise of delaying the disabling effects of MS. This has always seemed to me way too easy for the pharmaceutical companies: "Take this drug. If you don't feel any different, it's doing its job." The drugs were invented after I was already living with significant disability, but as the doctor who first precribed Avonex said, "Things could always get worse."

Tysabri is slightly different. The glossy packet of information my doctor gave me does show in colorful graphs, how it is longer before those who take it will use a wheelchair. Too late for me. The once a month infusion (administered at an infusion center) had some attraction. The info packet also included information about PML. Progressive multifocal leukoencephalopathy is a rare and usually fatal disease, incidence of which is increased by taking Tysabri. Six patients receiving the drug have contracted PML; four deaths have been linked to Tysabri. My doctor suggested it would be an appropriate medication because my MS is progressing.

Every time I worked the equation in my mind, the fact that "could kill me" was on the Tysabri side made the medication switch seem like a bad idea. It seemed that the doctor was suggesting that it would be better for me to risk death than to become more disabled. That made me remember the disability activist group called Not Dead Yet, formed to combat the spread of legalized assisted suicide.

When I think about suicide (and that is fairly frequent), I realize that I don't really want to kill myself. I want to kill a difficult situation. I want to kill the limitations that my care places on my family. I want to kill the lack of care I get from the medical system. A recent editorial in the New York Times pointed out that chronically ill Americans suffer far worse care than their counterparts in seven other industrial nations. For me, the antidote to suicidal thoughts is often to think, "If [name some level of care I am not receiving] were in place, would I still want to die?" Then I realize how much I want to live.

For instance, if I had someone who could help me to the bathroom in the middle of the day and someone who could take over my care so that Ralph and Alexis could travel, I would feel so much less a burden on them that I would stop wondering if there is a bridge over which I could drive my wheelchair.

Samuel Johnson wrote, "when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." My neurologist's suggestion that I risk death by taking a new medication has invited me to a new appreciation of life.

Friday, November 7, 2008

Birth of a Disability Activist

It must've been five years ago that I first had the thought that maybe I should work to change the health care system. It is so obviously broken. On the other hand, that seemed like an entirely self-serving activity. Poverty seemed like a more far-reaching and important issue. I did some volunteer work for Habitat for Humanity and felt like I was making a contribution.

Since this latest increase in my disability, I have called a local agency that serves people with disabilities. I explained my situation and asked them what they could do for me. They suggested Meals on Wheels. I visited my neurologist and asked him for a referral to a physical therapist. (Each day I feel myself getting more and more clenched up and spastic.) The doctor talked about a change in medication(more about that in a later post) and gave me a referral to a rehab doctor.

Time passed. Spasticity increased.

My husband, Ralph, discovered that, according to our insurance, we could access physical therapy services without a referral. I called a PT office near me to ask about it. They explained that while I didn't need a referral, I did need an order.

healthcare speak:
Order: to give a prescription for
the process of directing or redirecting (as a medical case or a patient) to an appropriate specialist or agency for definitive treatment

I called the neurologist's nurse. Before calling me back, she must have called the rehab doctor's office. She reported that they had not hurried to contact me since they have no openings in the near future. She convinced the doctor to sign an order for PT in the meantime. The rehab doctor's office called me that afternoon to set up my appointment for late January. I have a physical therapy appointment on Monday.

Since the health downturn, Ralph has been lifting me several times a day to and from my wheelchair. He is having back pain, possibly related to lifting, possibly not. Either way, I'm sure the lifting isn't helping.

I called my local MS Society office to ask about what help we could get. Their equipment guy told me that a Hoyer lift is one of the most frequently purchased items by insurance companies. He said that he would have a social worker call me back about home health aides, but so far I have heard nothing.

The slow pace of this process and the amount of dead ends I am discovering are frustrating me.

At the same time, the world has been focused on an economic downturn and the United States' presidential election. Because of the gadget I inserted into my last blog entry, I was invited to insert another.

Enter your name to get the REAL Washington story!
First Name:
Last Name:

When I used it at the end of a day of dead-end phone calls, it felt like a Sign.

To help my family and to help myself, I must become a health care activist. The only way to make its so it is not totally selfish activity is to make it a broader effort. It cannot be about me, it has to be about us.

Thursday, October 30, 2008

Bladder Botox, Take Two

I am in recovery from my second set of bladder Botox injections. They were done between 11 and noon this morning and I am just little achey now.

My urologist suggested that I save both of us time and trouble by getting them as an outpatient procedure at his office. It sounded good to me. Last time, I went to a hospital and spent the morning shuttling from one department to another before I received a general anesthetic and was taken to the operating room. Simpler sounded better.

This surgery scheduler checked with the pharmacy and the insurance company and discovered that insurance would not pay for Botox given to me directly. They would pay for it to be sent to the hospital, but not for me to pick it up. The urology office has decided to experiment: I am one of four patients for whom they paid for the Botox up front, hoping that the insurance company will cover it after the procedure. Of course, they also made me sign a piece of paper saying I will pay for whatever insurance doesn't cover, so I may be paying the price for their experiment.

Another difference is that the nurses used a "numbing agent," administered through a catheter, rather than a general anesthetic. That means I got to watch one nurse to train another as she prepared the injection. My urologist uses a bright blue dye in the Botox so that he can see where his last injection was. "You would think he could tell by looking at the blood," said one nurse to the other. She looked over at me. "You have that iPod turned on, don't you?" she asked. I did, but I could still hear her. "Pay no attention to that man behind the curtain," she said, evoking the Wizard of Oz.

The new guy on staff did the actual injections, with my urologist advising while he helped two nurses wrangle my spasming lags. I had warned the nurses about my new level of spasticity and they shrugged. "We'll handle it," they said and with the nursely practicality I adore, they did. they pointed out that, because of the dye, I was getting my bladder tattooed. I asked the doctor if he could do it in the shape of a rose, but he said urologists prefer kidney shapes. It's hidden, of course, so I have only their word for it. It is fun to consider some personality adjustments in keeping with my new, tattooed, self.

Even with a half hour wait for the numbing agent, we were done in an hour.

I am taking tomorrow off work, but judging by the way I feel now, I wouldn't really need to do so.

I hope the result of this set of injections is as helpful as the first set. When Western medicine has an answer it does a fine job.

Thursday, October 23, 2008

Dreaming Health Care Advocacy

A few days ago I had a dream:

I am at the doctor's office. He tells me I have a tumor in my breast that needs to be removed.

I say to him, "First of all, it isn't cancer. If it turns out to be cancer, I will make sure to tell everyone and have my family tell everyone how quick you were to offer an invasive surgery and yet you have nothing to offer to help me with this chronic illness!"

End of dream.

Last Sunday, we went to after hours care so that I could get an x-ray to make sure there were no fractures as a result of the fall that has put me in such pain. We went on Sunday so that Ralph could come along and lift me on to the x-ray table. Oddly enough, hospitals and doctors offices don't have anyone available to help me transfer from one surface to another. The x-ray came back clean. The physician suggested I follow up with my regular doctor in a week if I'm still in pain.

I got a massage yesterday, buying me a couple of hours of pain-free living. I have another scheduled for tomorrow. Also scheduled for tomorrow is a call to a local agency that helps people arrange care for their aging or disabled family members. This call is the first of what will probably be several as I try to get some help for myself and my "primary caregiver."

My dream tells me that at some future time I need to expand from self advocacy (at which I am a complete beginner) to advocacy for systemic change.

AARP has a fantastic viral video that teaches about the source of change. Enter your name into the widget below and enjoy.

AARP 08 Video
Enter your name to see who can bring real change to Washington.
First Name:
Last Name:

Thursday, October 16, 2008

Collateral Losses

I am still not doing very well at keeping this blog up, am I?

I have been dealing, lately, with several physical issues, most of which aren't caused by the MS, but are part of living with disability.

My hands have been increasingly affected by the MS. By the middle of the day, it's hard for me to type. By the time I get home from work, I feel like I have flippers on the ends of my arms. This does not encourage me to write.

New solution: software called Dragon Naturally Speaking. It is a wonderful program that enables me to talk into a microphone while the software takes dictation and the computer types. As advertised, it took only a few minutes of training until the software was very accurate. I tried similar software about four years ago and it was pathetic. I would get so distracted by all the mistakes the software was making that I couldn't follow through with my thought. Here I am, at my new desk using my new software and completely out of excuses for not writing. We'll see what happens from here.

Getting Dragon software didn't cost too much money but it did have a significant price: it doesn't run on the Mac. I have been self-righteously a Mac person since I started using a personal computer. Switching to a PC ha s been a bit of a wrench. Sometimes reasonable accommodations aren't convenient or enjoyable. I end up choosing the lesser of two evils.

I have one last toenail than when I last wrote. A few years ago when we moved from California, my big toes experienced some injury that I didn't feel. My two big toenails were bruised and damaged and haven't looked quite right since. Using the wheelchair all the time, I travel the world feet-first, my footrests holding my toes out in front of me. Sometime in the last couple months, my right toe was damaged again. I assume I smashed it against a door, since the only way I can get through doors without handicap buttons is to push them with my feet. The podiatrist I visited removed my toenail. It may or may not grow back.

A couple of weeks ago I fell. It was my usual not-quite-making-the-transfer and sinking fairly slowly to the floor. This time, though, I pulled a muscle in my right thigh. Since then, not only have things been painful, but I am unable to transfer without Ralph lifting me from one surface to another. This is a big blow to my independence.

I went to church la st Sunday and the service included an anointing for people praying for healing. I didn't expect it, and as soon as I went up front, I started to cry. I hope not many people could tell. My friend Carolyn, who is one of my angels, lent me her shoulder. She had polio as a young woman and uses a wheelchair, so she knows the frustrations.

I hope that this injury will heal and I will be able to regain some independence. Meanwhile, this is a wake-up call that I need to identify some additional support for us. Carolyn helps me understand that I need to take responsibility for getting what I need.

I am mad that I can't just turn my case over to some social worker who can identify resources and get me connected to them. Case management seems like a huge, tiring, undertaking. I complain that it isn't fair and that the health care system is broken. That may be true, and I often think that I should become more of an advocate for systemic change. What I need to do right now, though, is start making some phone calls. It is better to light a candle than to curse the darkness.

Tuesday, August 19, 2008

Trial and Error and the Serenity Prayer

Two things happened four months ago that made blogging almost impossible for me: I started using a wheelchair and increased my work hours. I was using an old "student desk" with a knee hole about fifteen inches wide. My wheelchair footrests don't fit in that width so, for some weeks, I sat at an angle to the desk with my arms stretched out to reach the keyboard. After six hours using the keyboard at my office, my arms were too tired to type without support. I stopped typing at home. Terse emails. No blogging.

It took me a while to realize that's what was happening. I had to live through a few weeks when I thought I just wasn't getting around to it before I realized I was avoiding my desk. It took a bit longer to figure out a solution and implement it. Now I my desk is a sheet of plywood, set high enough so my knees and chair roll under it easily. Today I reached a switch at the back of my computer, something I couldn't have done prior to the desk switch. Yay, an unexpected benefit. I'm hungry for those.

I'm still learning how to live with the wheelchair. It's all trial and error. This morning I tried putting the wheelchair in a different spot when I transfer to the toilet. I've been asking for help with that transfer almost all the time. That means I have to be accompanied to the bathroom—a pretty limiting factor. I've made the transfer once with the chair in the new position. It's promising, but I won't know until I've tried it several times whether it is the new "procedure." That's the nature of this beast.

I've been thinking about the nature of the adjustment process. It's really the process of learning, the process of experimenting.

First, (as I discovered with my blogging impediment) I have to recognize a problem. I have this informal goal of adding to this blog every other week. The "missed that one" signals had to add up to a noticeable point. Life does intervene and I want to allow it, but I want to honor my commitments to myself, too. I had to be conscious that something wasn't right.

Then I had to identify the characteristics of the problem and apply the serenity prayer. ("God g rant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.") One of the things that's not right is that my hands and arms are increasingly affected by my MS. By afternoon, my fingers are missing as many keys as they hit. I can't change that. I do better if I can rest my arms against the edge of the desk and, with that old desk, I couldn't do that. That was something I could change, so I (with help) did.

My husband built my new desk. The project description: the new desk had to be high and wide enough to roll under. It had to be positioned so I could drive to it. It had to be near power. Ideally, it wouldn't be in our living room. Here I am, enjoying all those features. I'm at the "trying the solution" part of the process and I'm mostly happy.

This solution involved rearranging, basic carpentry skills, some time and some screws and plywood: a low-risk trial. My toilet transfer difficulties might be solved by purchase and installation of a $500 grab bar...or they might not. I'm experimenting with wheelchair placement because it's a cheaper alternative. The "error" part of this equation requires being willing to be wrong. It's a risk of time, money and those most precious commodities (especially with chronic illness in the picture): physical and emotional energy.

When the solution doesn't work, I'm back around to recognizing and analyzing the problem again. The good news is I have more information. The bad news is I have more emotional baggage. I (like much of the world) have been watching parts of the Olympics. For me, watching someone walk is miraculous. Imagine my stupefaction at seeing the edges of human capabilities. More wondrous, these kids can make major mistakes and then return to super-human perfection for the rest of their performance. These athletes are not just demonstrating physical skills; they are psychological Olympians as well. When what I try doesn't work, I have to get over it and find something else to try.

The hardest part, for me, is to be willing to do this over and over, to be willing to have this be my life. There seems to be so little stability, such a small amount of coasting. My life is an effort. Wishing for it to be otherwise, I lose my patience and my peace. It is better for me to accept the never-ending process.
  1. Recognize the problem
  2. Identify the characteristics of the problem
  3. Find a potential solution
  4. Try the solution
  5. Be willing to be wrong
  6. Analyze—and release—the failure
  7. Try something new
  8. Be patient with the process
  9. Repeat steps 1 through 8 forever

Friday, April 25, 2008

The Real Wheels: When OCD Comes in Handy

I took possession of my very own wheelchair ten days ago.  I've been working hard ever since. I used a scooter most of my waking hours for ten years.  With a wheelchair, EVERYTHING is different.

Years ago, I remember watching my toddler niece moving through her world.  She was discovering the basics of moving with an upright body:  When you're standing on something, you can't pick it up.  When you climb over something, you swing one leg over first, get your balance on the new side and then swing the other leg over.  She was a problem-solving critter.  Everything was experimenting; everything was learning.

That has been my world for the last ten days.  I need to discover and remember new procedures for moving to and from the toilet, the shower, the bed and the driver's seat.  I need to learn how to maneuver the wheelchair down ramps and narrow passages and through doors. I am conducting a constant time-and-motion study.

OCD, obsessive-compulsive disorder, is popular in the media these days.  I believe most of what we label mental health disorders are human tendencies  carried to an extreme.  We are all on an obsessive-compulsive continuum.  It's a disorder when it gets in the way of living our lives.  My OC behavior is actually working in my favor lately as I try to wrangle my body and wheelchair through the world.

So far, the transfer with which I've made the most progress is the one to and from the toilet in my home bathroom.  It goes something like this:
  1. Position wheelchair facing the grab bar, but at a slight angle.
  2. Turn chair power off.
  3. Unclasp seat belt and move belts to sides of seat.
  4. Use hands to move right foot on to left foot rest.
  5. Swing away right foot rest.
  6. Use hands to move feet off left foot rest.
  7. Swing away left foot rest.
  8. Shift left hip forward in chair until left leg has an extensor spasm.
  9. Lean body forward to keep spasm from traveling into torso.
  10. Grip grab bar with left hand.
  11. Position left foot about five inches from wall.
  12. Push with right hand against wheelchair arm rest while  pulling grab bar with left hand and maintaining spasm in left leg.
  13. Swing body into standing position with weight on left leg.
  14. Hold grab bar with left hand.
  15. Use right hand to pull up dress.
  16. Hold dress hem in teeth.
  17. Use right hand to lower underwear.
  18. Move right hand to left wheelchair arm.
  19. Release left leg spasm.
  20. Lower bottom to toilet, pulling on grab bar and wheelchair arm to avoid torso spasm.
That completes that process.  I'll spare you the next one, which is the catheterizing procedure.

Steps 12, 13 and 19 are the trickiest ones, as I try to create, sustain and release a spasm.  A spasm is, after all, "a sudden, involuntary, muscular contraction or movement."  Involuntary is "done without conscious control."  I'm dealing, by definition, with the impossible.

Then there are steps 15 and 17, where my increasingly weak and floppy right hand sometimes loses its grip, necessitating a "do-over" for which my pitiful left leg may not give me time.

Let's not think about the number of times I've tried to stand without unclipping the seat belt.

Some day—in a month or six—I will have figured out how to do all these new movements and won't have to think so hard or retry so many times.  Until then, I have to make my peace with a background buzz of mental and physical exhaustion.  

Tuesday, April 8, 2008

Road Trip Report

Two days ago we returned from a trip to Walt Disney World.  From our house to our hotel was 1.565 miles and Alexis had a week for her spring break.  We left Friday afternoon, spent two nights in transit and arrived on Sunday.  A week later, we did it in reverse.

I'm glad we went, but it was a hard trip for me.  We last visit WDW five years ago when I was able to transfer from my scooter, often without help.  This time I basically needed to be lifted for every transfer.  I was just getting over the cold/flu from hell and that made me weaker and sadder.

We asked for accessible hotel rooms and got them all but one night, but what that means varies wildly.  The best stop gave us lots of room between furniture, grab bars near the toilet, a roll-in shower and a lowered sink in the kitchenette area.  The least convenient accessible room just had some grab bars in a fairly small bathroom with tub and no shower stool.  

Disney does a great job of serving people with disabilities and we also had a good book, PassPorter's Open Mouse.  Disney makes their buildings pretty accessible, provides information about the accessibility of rides (sometimes you can stay in your wheelchair, sometimes you have to transfer to a standard wheelchair, sometimes you have tø transfer to a ride vehicle, etc.)  They have special seating areas for performances and parades that provide relief from the typical experience of using a wheelchair in a crowd--what I (inelegantly) call "the butt show."  They also train their staff ("cast members") to be helpful and friendly. Passporter's provides detailed info covering a good range of disabilities, including autism and ADHD.

I didn't attempt any rides this visit and that reality was a bit difficult for both me and Alexis.   We have fond memories of riding Test Track twice in a row because a kind cast member, having seen how difficult the transfer was for me. suggested we go around again.

Happily, Disney has a good amount of "companion rest rooms," where Ralph could help me transfer.  Most states have them in rest stops, too, which made the car trip easier.  If everybody would stop installing toilet paper dispensers right above the grab bar, it would be even better.  (It's so common it must not be part of the ADA.  It would be great to add it but, last I looked, we are playing defense.)

What with needing help in the bathroom and not going on rides, it was easy for the "I'm-a-burden" monster and its sibling to roar loudly.  I kept thinking (and sometimes saying), "I should have stayed home."  (But, as I'm not independent, we would have had to hire help or impose on friends and relatives, which gives that monster even more to say.)

My favorite parts of the trip were the Disney fireworks shows and riding through Tennessee. One of the best things about humans is our capacity to appreciate and create beauty. and surprise.  Disney increases both beauty and surprise by adding lasers. water, fire and good stories to the shows.  Tennessee's Smokey mountains surrounded us with green pines and purple redbud trees.  Rust-colored rock faces beside the road opened for small waterfalls. Beautiful and elemental.

A coworker took her four year-old to Florida and when we asked what his favorite part was, he said, "coming home."  I was delighted to return home to a bathroom I can often manage on my own.  That's part of travel, isn't it?  Appreciating what you find when you get home.

Tuesday, March 18, 2008

Smaller Life, Part 2

When my daughter, Alexis, was about three, she rode a variation of a merry-go-round. As she came towards where I was sitting, I would wave at her. "Are you going to wave every time?" my husband, Ralph, asked. "Yes," I said and I did. There are many things I can't do for my child, but I can always be her audience: watching for and acknowledging her accomplishments.

I've been thinking about my role as audience as I've been moving towards a smaller life. Since I last wrote, I've resigned from two volunteer activities. Both of them involved Saturday morning meetings. I take my Avonex shot on Friday nights, which means I often feel lousy on Saturdays. I don't trust myself to drive when I feel weak and muzzy, so Ralph and Alexis have been driving me to the meetings. They've been gracious about the whole thing, but I've been longing for some slow-moving Saturdays.

The first time I worked through Step 3 of the Twelve Steps, I was in my mid-twenties and obsessed with "what God wants me to do with my life." I hadn't been in the program too much longer before I decided that God cares much more about who I am than what I do. I need a God who will nudge me away from my unhealthy attachment to accomplishment.

When I consider what I mean by "a smaller life," my fear is that I will become a useless couch potato. What I'm trying to move away from is a level of activity that might work for some people, but has been leaving me exhausted, resentful (from whence I go easily to guilt-ridden) and frequently in tears. There has to be some middle ground.

It seems to me it's about setting priorities. Googling "setting personal priorities" was dangerous because it led me to many goal-setting, success-oriented sites. Those easily suck me into heroic models that don't fit my life.

So I return to the idea of myself as audience. Suppose I made it my mission to watch for and acknowledge the accomplishments of those around me? Rather than pretending I can give up my focus on Doing, it tweaks it a bit. I don't have to give up my natural tendency to admire accomplishment, I just have to give myself permission not to be the doer. That sounds like it's worth an experiment.

P.S. The insurance company has approved a wheelchair.

Tuesday, March 4, 2008

Moving Towards a Smaller Life: Strategic Withdrawal and Yieldedness

It's a hard time of year and a hard year.

In Minnesota, the below-zero wind chills (and temperatures) are over-staying their welcome. I can look out my window and see a snow pile five feet high. I'm ready for the return of warmth. I'm ready to be rid of these layers of clothing that make it harder to move. I'm ready for less effort.

Some of my exhaustion IS about the time of year and some of it is about the way I've been living my life. I recently got a fortune cookie that advised me (in words more poetic than I can recall) to spend my energy in ways that give me more energy. It sounded like good advice, under the circumstances.

My life is full of balancing acts and this is one of them. On one hand, I want to be active and involved. I want to be LIVING life. This desire is made stronger by the knowledge I have—a body-knowledge deeper than head-knowledge—that next year I will be able to do less than I can this year. This idea of my being in decline is rejected by many people around me. They imagine it is pessimistic or, worse, that it will be self-fulfilling prophecy. My experience, in this body, is that it is a realistic expectation.

This is not a post about the power of positive thinking though, that, too, is one of my balancing acts. This is about the tides of activity level and how to surf them.

In the last few years, I have been increasing my activity level. We returned to Minnesota and I wanted to get back to some groups I had missed. New opportunities (including a part-time job) presented themselves. My "strike-while-the-iron-is-hot" attitude was in ascendance.

Now I find myself over-extended and tired. I need to decrease my activity level and that isn't easy. I feel like I'm letting people down. The pop-psychology idea that I'm "not saying no to others, I'm saying yes to myself" seems like selfish drivel.

The phrase in my mind this morning (I grew up in the waning days of the Vietnam conflict) was "strategic withdrawal." "One of the reasons for withdrawing," (says someone who has some connection with the "military classroom") "is that the terrain cannot be defended, and thus we withdraw to terrain that can be defended."

In my personal life, it's about deciding what I want to "defend." That's where it gets sticky because my withdrawal from something is saying it's not important to me and I worry about hurting people's feelings.

I bumped into another word this morning: yieldedness. In my reading, the context was Amish thought (Amish Grace) and surrender to God's will. In my life, I saw it as an invitation to accept the realities of living with chronic illness.

A friend of mine recently died after a couple years of wrestling with pancreatic cancer. In her eighties, she opted for surgery and chemo and fought more aggressively than I would have. She bemoaned the fact that all she could do some days was sit on the couch. She hoped to return to a more active life.

Visiting with her was a gift to me because she was a gift to me...even as she sat on the couch. Her life took place in a very small space and yet she continued to teach and give even when she was not aware of it.

I have been imagining that doing and being active is somehow a measure of my worth. I have thought that "living large" is somehow a virtue.
i exhausting, one that does not have to be defended. I am feeling called to yield.

[This feels like part 1 of something longer...we'll find out.]

Tuesday, February 19, 2008

Botox bladder miracles

Warning: this post concerns incontinence, a subject that disturbs some people.  It disturbs me, too, but I'm in the process of convincing myself that we human beings could support each other better if we talked about it.

So I've been telling people about my recent experience: A couple weeks ago, I received botox injections that were definitely NOT cosmetic.  They were, rather, a treatment for incontinence.

I first started having MS-related bladder symptoms in the late 1980s (not quite ten years after being diagnosed).  MS-related nerve damage affects bladder function in a few ways.  Nerves fire causing muscles around the bladder to spasm.  That causes the brain to think, "I gotta go."  Conversely, when the brain tells the sphincter to let go, the message doesn't always get through. So I felt like I always wanted to pee, sometimes peed without warning and  sometimes couldn't pee when I tried.

My first response was to wear pads in my underwear to avoid accidents.  That worked for a while, but I reached the point where my first stop at any venue was the restroom.  My neurologist referred me to a urologist who promised, "I'll give you your life back."

The first step was a urodynamics test: the bladder is filled and emptied through a catheter so medical folks can watch what it does.  It showed I had urinary frequency, urgency and hesitancy. I started taking oxybutynin, a medication that reduces spasms in the muscles around the bladder.  I also learned to self-catheterize.  When I needed to pee, I'd insert a small plastic tube along my urethra so that I could fully empty my bladder.  Because that increases risk of infection, I also took nitrofurantoin, an antibiotic targeted to bacteria that cause urinary infections.

I did feel like I had my life back: less fear of embarrassing moments, less needing to know the location of every restroom in every port of call.

That combination worked well for about ten years.  At some point, leaks started occurring again, often enough that I began wearing "disposable underwear."  Luckily this was at about the same time that bladder taboos relaxed enough that such products were available at Target and Walgreens, rather than only by special order.

A little more than a year ago, I realized I was going through three or four pairs of underwear each day and was wet much of the time.  Two factors were at work: my urinary symptoms were increasing and my legs were weaker.  I would delay or avoid visiting the restroom because I was afraid of falling when transferring to the toilet.  My neurologist suggested another urologist consult.

After trying some alternate medication (which didn't work as well), my urologist scheduled me for another urodynamics test and an ultrasound to make sure my kidneys were not being damaged by urinary back-ups.  Then he suggested the Botox treatment.  Botox injections into the muscles around the bladder paralyze them. No spasms means no urgency and no frequency.  He made it sound like an easy, in-office procedure, but cautioned we'd have to get insurance pre-approval.

I was surprised and anxious when the scheduler called to set me up for "surgery" and advising that I see my regular doctor for a "pre-op exam."  My doctor declared me "healthy, aside from the obvious" and assured me pre-op exams are the norm these days "just to cover somebody's backside."

The surgery was surgery: six hours at the hospital with a flurry of forms, repetitious checks of name,  birth date, drug allergies.  The (20 to 30) injections were done, thank goodness, under general anaesthesia. I was sent home with pain pills I didn't use.

Symptoms increased slightly for a few days and, the Tuesday after the Thursday surgery, a miracle occurred.  No urgency; no frequency; no leaks.  After all these years, this is a heaven-opens-angel-choirs-sing miracle.

The downside is that this is a temporary condition that will last some months.  At some point, symptoms will return and we'll have to do it all again.  Until then, I have my life back. Again.

Tuesday, January 22, 2008

Second Attempt at a Wheelchair

For the past week, I've been driving (off and on) an Invacare wheelchair. As promised by the Rehab Specialist, this model addressed many of my earlier frustrations.
  • The mid-wheel drive made the chair much easier to steer (even with a joystick) and made for a tighter turning radius. Swiveling sure beats the forward-back motion of the scooter!

  • The smaller size meant I could (with some planning) reach the floor.

  • Shorter armrests allowed me to get closer to sinks, computer keyboards, etc.

  • With swing-away footrests, I could transfer more easily. (The bathroom at work continues to baffle me, though. If I get a wheelchair, I will have to ask for some accommodation, but WHAT, exactly?)
There were still some problems. With my vast, two-wheelchair experience, I can separate (I think) the ones that come with wheelchair territory from the ones that can be addressed.

Carrying stuff with a wheelchair is going to be tricky.
Getting through doors will take caution and strength.

But, we can find a different headrest (the loaner had a Stealth headrest) that will not spear passing ten year-olds.
We can adjust the footrests so they're not at odd angles.

The wheelchair is definitely more comfortable and maneuverable than the scooter. Assuming I get one, it will usher in a whole new learning curve. After today, the issue will be in the lap of the insurance gods.

Tuesday, January 8, 2008

Dealing with Difference

Almost thirty years ago, in Professor Wu's Chinese Philosophy class, I fell in love with the Confucian idea of corrective action moving from the personal to the global. First you change yourself. That changes your family, which changes your village, which changes your country, which changes society. (I do see the counter-argument here that this leaves individuals safely navel-gazing rather than challenging the existing power structures, but I like the practicality of reachable first steps.)

I realize that my own relationship with disability is moving from the personal to the political.

So far, I've been focused on my own internal experience of living with disability and chronic illness: coming to terms with the unexpected abnormalities of my body. I'm choosing that word deliberately. The imaginary construct of "normal" may be one of our least useful. I grew up expecting a normal life. I hoped secretly to be extraordinary, but never considered the root meaning of that word: "outside the course of normal events." For twenty-five years, I have been learning how to cope with being abnormal.

Perhaps most of my work has been internal because my disability has stayed within the bounds of "inconvenience." Yes, I have been visibly disabled for the last ten+ years, but I have been able to function, for the most part, as a normal person. In the last year or so, that has been changing. Until recently, changes in my environment could compensate for my physical limitations. That is no longer true. There is very little "normal" left in my life.

On the other hand, this is a fairly normal situation."According to the U.S. census in 1997, roughly one out of every five Americans qualified as disabled. That is 55 million people; 33 million people qualified as severely disabled. The numbers are probably much higher than this. And as Americans live longer, their chances of being at least temporarily disabled rise significantly. Yet the irony of disability is that it is both present and absent." (Who’s Not Yet Here? American Disability History
Susan Burch and Ian Sutherland) Twenty percent of us are abnormal because of disability. If we start adding other abnormalities into the mix, there will be no one drinking at the "Normals Only" fountain.

For the last several years, I've struggled with accepting my own differences. Now I'm wondering how to apply what I've learned to the wider world. To be honest, I'm also wondering how to teach the wider world to respond to me. This connects, I think, to my earlier post about mutual help

For the last twenty years, I've been working to apply my understanding of the creative process to the rhythms of chronic illness. My new "research project" is: What does it look like to be a person (family, village, nation, society) that responds compassionately, courageously and creatively to the differences among us? How do I embody that in the world?

There's a good project for the next twenty years.