Book Review: The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life

I’ve been wanting to read The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life by Allen Rucker for a long time as he has the same ailment I did/do, Transverse Myelitis, and I “met” him at the Transverse Myelitis Internet Club.

His case is worse than mine as he was paralyzed from the waist down and hasn’t recovered more than a bit of movement, but there were many things I could identify with. In fact, the first several pages were a little hard for me to read due to bringing back so many similar thoughts, experiences, and sensations (or lack thereof).

Allen details the initial paralysis and treatment, the clinging to hope that he would recover, the denial, anger, and depression in realizing that he wasn’t going to recover much movement, and finally acceptance and learning how to live with paralysis. He discusses the effects of his condition on his family and his career as a Hollywood writer. As he says in the introduction, “I became paralyzed and then had no choice but to get on with my life in ways that has eluded me before.”

He’s also quite honest with his feelings throughout the book, and that was the “meat” of the book for me. He writes of the first few weeks after coming home from the hospital:

I felt a bit like a wild animal that had been captured, hospitalized, and rehabilitated and was now going through the gradual process of being reintroduced to its native surroundings. I knew I wasn’t ready to bound back into the outback of human society. I was a little week from six weeks in a hospital bed, but that wasn’t really the problem. The problem was psychological. I was embarrassed, ashamed, and scared. I had been stripped of my dignity (p. 54).

Years later, he knew things were different in his own outlook when watching an episode of Law and Order in which a woman “wanted to exercise her right to die because she was a hopeless paralytic. ‘I’m weak,’ she said, ‘tired, in constant pain, incontinent, and I’ll have to spend the rest of my life in a wheelchair.'” Allen’s response was, “So? What’s the problem?” (p. 174).

He tells of some of the bizarre things that happened to him, like the EMTs who first attended him thinking he was having a panic attack , a muscle spasm, or otherwise faking it and chiding him for taking up their time when someone might really need their help, or being pushed out of the way in his wheelchair during someone’s race to an elevator, or a somewhat stoned man who saw him in a line at Starbucks and then started pushing him to the front of the line to buy him some coffee “for everything this guy did for us in Nam” (p. 61).

The book is laced with Allen’s humor. I particularly enjoyed his idea for a daily flip calendar with the benefits of being paralyzed with maxims such as “You’ll never again hear the words, ‘Hey, while you’re up could you get me…..,'” or “You have to buy a new pair of shoes only once every five years” (pp. 176, 178).

He also discusses other people’s reactions to paralysis, from the awkward to the overly sympathetic to those who encourage wheelchair athletics and such. Of the last he says, “The problem for chair users is feeling pressured to do things you think are unwise, or just uncomfortable, in order to keep up a hearty appearance. If you are in no condition or mood to ski, bowl, or get down on the dance floor, just roll away. It’s your God-given right to just be paralyzed. You don’t need the stress of being super-paralyzed…You have nothing to prove. Paralysis isn’t a contact sport or a race to sainthood” (p. 211). He goes on to say. “This kind of thinking runs counter to the aggressive ethos of the ‘new disabled'” which might work well for those in the twenties, but “you just might find that operating inside your limitations could be liberating” (p. 212).

Most of you who read here regularly know I usually read books from a Christian viewpoint, and this book is not that. There is a smattering of course words and crass remarks, some philosophies I wouldn’t espouse, some views I wouldn’t hold to personally. But aside from that, I really appreciated Allen’s insight.

This book would be good for anyone with transverse myelitis, anyone who is paralyzed for any reason, or anyone who knows someone who is paralyzed or in a wheelchair or has transverse myelitis — or anyone interested in any of the above.

(This review will also be linked to Semicolon‘s Saturday Review of Books.)

A public service announcement concerning walkers

No, not the walkers babies use, but the ones the elderly or disabled use.

1. Do not pull or jerk on the walker, even if trying to help the person over a bump. There are several reasons for this:

  • It throws them off balance.
  • The walker is an extension of themselves and it is an invasion of their personal space as much as if you pulled on their arm.
  • It can make them feel helpless and embarrassed.

Sometimes, however, the person may appreciate a little assistance if they are having trouble maneuvering. If you see someone trying to get their walker up a step or over a hump, be patient and observe for a moment and see if they are doing all right or seem frustrated. If you think they might like help, offer first. “Mrs. Jones, can I help you get your walker over this step here?” Don’t just jump in and jerk it. Gently lift it, especially being careful if they are leaning on it for balance: you may need to let them take your arm as well, depending on whether they can balance on their own for a moment or need help with a step.

2. The person with a walker usually understands that he or she is a little slow and you may want to get around them, and that’s fine, but please don’t cut in too closely — the sudden movement and closeness can also cause balance to waver.

3. Some people can’t stand long even with a walker. They would love to talk with you, but may need to sit down first.

4. If you see someone coming with a walker, please move out of their way. Often they feel conspicuous and cumbersome and are embarrassed to ask. Some are not, though, and will just call out a cheery, “Beep, beep!” or something similar — please don’t be offended.

5. Similarly, please don’t be offended if they accidentally bump into you. Sometimes, especially with older people, their depth perception is affected as well. Some might not even be aware that they bumped you, but most would be horrified.

I am writing both from the perspective of having used a walker for several months after TM, but also from my elderly mother-in-law’s perspective now. I think most people mean well, but have just never thought about or experienced some of these things from the point of view of one using a walker. A little patience and thoughtfulness are much appreciated.

Please feel free to share anything I may have forgotten or not thought about, but please keep it positive. I don’t want people to think we’re ranting or griping at them, but rather just informing and educating.

Woman to Woman: Enduring Health Problems

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I’ve just recently discovered that two bloggers, Morning Glory from Seeds From My Garden and Lei from My Many Colored Days, host something called “Woman to Woman” a couple of times a month. A topic is posted and women who want to can blog about that topic and link to the host sites.

The topic for today is “Enduring health problems – either your own, a spouse’s or a child’s.”

Up on the very top of my sidebar is a list of “Pages” — posts whose links stay there. I wrote extensively there about my experiences with transverse myelitis, or TM. In fact, one of my reasons for starting this blog was to have an outreach for others with TM.

Transverse myelitis basically either a virus or an auto-immune response to some stimulus which causes demyelination , or damage to the myelin sheath around nerves in the spine. What symptoms one has depends on where along the spine the damage occurred: the higher the attack, the worse the symptoms.

Mine started with one arm feeling a little funny, like I had slept on it wrong. Within about three hours that arm was totally numb, both legs and my lower torso were numb, I couldn’t walk on my own, and I was having bathroom-related problems. I was in the hospital for eight days and had multitudes of tests run before finally receiving a diagnosis — for something I had never heard of before.

It was a scary time. For the first couple of weeks I hardly had energy to do anything. Even taking a little sponge bath in the hospital and sitting up in a chair so the nurses could change my bed was exhausting — I’d be broken out in a sweat and crawling back into bed when they got done. We faced a number of questions: would I get better, completely or partially? We were home schooling at the time: would we be able to continue? How would I take care of my children, the youngest of whom was not quite two? The medical community really couldn’t give us an answers: my neurologist said, “You’ll probably gain everything back within two years: if not, you’ll be used to it by then.” I thought, “NO WAY, not acceptable. I can’t live with this.”

Well, with time and God’s help, you can learn to live with a lot of things. 🙂 Within a few months I went from walking with a walker, then a cane, then walking wobbily on my own. My lower left arm and lower legs are still numb. I can’t feel heat or coldness or pain in right foot. My balance is one of my worst problems, worse when I am standing still than walking. Bathroom issues are better but still a consideration. Fatigue is a major factor many TMers report — just can’t “go” like we used to. In the early days I would have to save up energy — if we had something planned I would have to rest up the day before and crash the day after. That’s better now, but I do still run out of steam earlier than others, earlier than I would like. Then there is a whole list of little odd symptoms — in fact, one post simmering on the back burner I’d like to put into words some day is about some of the weird, odd issues resulting from TM.

One of the things I hated most about all of this was the effect on my family. I think as homemakers we tend to take our everyday tasks for granted and feel that they are not really important in the grand scheme of things. But when all of a sudden you can’t do those things, it adds a tremendous burden to the rest of the family. We did have many people from church volunteer to bring meals, watch the kids, do some cleaning, and that was a great help. But you know how it is — there is almost more to do than can be kept up with as it is, then take a functioning member of the family out, and that’s a cause for stress. It did make me value my contribution to the family more, and it was one of the strongest motivators to get better. Even with all the stress, though, I saw the Lord minister to my family in special ways. Here’s one example: Jason’s Sunday School lesson that next Sunday morning was on Romans 8:28 — it had just been in the plan, the teacher had no idea what had happened. When Jeremy began to question why all of this was happening, Jason shared what he had learned in Sunday School.

One of my first responses spiritually was, of course, to cry out to the Lord for help. Next I began to ask Him if there was anything wrong, any sin that was causing this. I don’t believe every illness is a direct result of a person’s sin (see John 9:1-3), but sometimes He does use illness as a chatsisement or a means to get someone’s attention and turn them back to Himself. At the very least I certainly didn’t want anything blocking or hindering answer to prayer (Psalm 66:18, Isaiah 59:1-2). We followed James 5:14-15 and called the Pastor and a few men to come and pray with us and anoint me with oil.

Then it was just a matter of every day going through the challenges of that day, seeking the Lord, resting in Him, wrestling with fear, with unanswered prayer, limitations, reasons for suffering in this world in the first place.

I read something of Spurgeon’s once in which he wrote about the verses in Hebrews 12:

26 And His voice shook the earth then, but now He has promised, saying, “YET ONCE MORE I WILL SHAKE NOT ONLY THE EARTH, BUT ALSO THE HEAVEN.”

27 This expression, “Yet once more,” denotes the removing of those things which can be shaken, as of created things, so that those things which cannot be shaken may remain.

28 Therefore, since we receive a kingdom which cannot be shaken, let us show gratitude, by which we may offer to God an acceptable service with reverence and awe…

I would love to find that again, but he said something along the lines that sometimes God shakes up our world to let loose the temporal things which can be shaken and to focus us on that which “cannot be shaken.” When all the props are pulled out from under us and we can only lean on God, we find Him more than sufficient.

I wrote the following near the end of my page titled Onset:

As a Christian, of course I look at life through a certain “lens” or world view. I don’t remember for sure, but I don’t think I ever asked, “Why me?” If we have to ask that, we should ask, “Why anybody?” I believe that God created the world and people perfectly, but when sin entered the world, God’s creation was marred and will bear the consequences until the day He redeems it. So, the short answer to why disease and disability and pain and suffering are in the world is that it is a fallen world. We’re not in heaven yet, where “there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away” (Revelation 21: 4).

I believe that God has a purpose for everything He allows. He’s not capricious or whimsical in His dealings with us. “But though he cause grief, yet will he have compassion according to the multitude of his mercies. For he doth not afflict willingly nor grieve the children of men.” (Lamentations 3:32-33). Whatever He does allow, He promises His grace for (II Corinthians 9:8: “And God is able to make all grace abound toward you; that ye, always having all sufficiency in all things, may abound to every good work”) and He promises that it will work out for our good (Romans 8:28: “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”)

I can say, with the Apostle Paul:

For this thing I besought the Lord thrice [more than thrice in my case], that it might depart from me.
And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong” (II Corinthians 12:8-9).

Transverse Myelitis

One of the things I wanted to do with this blog is share how the Lord worked in and through my experience with Transverse Myelitis. I hope it will be a testimony and an encouragement to other TMers, and maybe even to others who might happen across it. When I first wrote out everything I wanted to share, though, I ended up writing nine pages! I discovered a way to break that up into smaller chunks so that hopefully it will be easier reading: through the Transverse Myelitis pages in the side bar. It put the different entries in alphabetical rather than chronological order, but so far the entries are: a Condensed version, Onset (a longer more detailed account), God’s Help, Fear, and Unanswered prayer and reasons for suffering.