Spoiled Only Child

Day One: Oh God

Well, the first day of my new plan is drawing toward evening and ... shit. Well, I did some of the things I aspired to. I meditated, went to the pool, did my PT exercises, made an accupuncture appointment for tomorrow, did a little bit of work (emphasis on the little bit). But I also googled stuff, read horror stories, cried and panicked, and had about an hour where I was saying in my head, "I don't want to live through this. I would rather die."

But I did get myself together. And do you know how? By praying, praying to God. I asked the God I don't believe in, the God I have openly scoffed at, to help me. And you know what? It fucking helped. Either that or the valium I took. I read last night in a book about Buddhism that the Buddha said that the only point of religion is as a tool to relieve your own suffering. So you can just take whatever parts of religion make you feel better and use them however the hell you want. So today I prayed to God. How true it is that, the more you learn, the more you learn to be humble and recognize how little you actually know.

Anyhow ... do you know what the problem is, the real problem that is causing me so much agony? My back doesn't hurt enough. And it hurts in the wrong places. The last time, I had the absolute classic symptoms of a herniated disc--and, while I did have ups and downs, in general I felt like I had a lightning bolt of nerve pain running down my right leg. I was a textbook case, and therefore a good candidate for surgery. This time, things are weird and complicated. My leg, which was my chief problem last time, hurts some days and not others--and never as bad as it did before. I also have pain in my abdomen, which is just strange. And then I have these awful spasming muscles in my upper back, which many days--like today--cause the majority of my suffering. And nobody really knows if surgery would help that problem. The muscle pain is certainly not a reason, on its own, to have surgery.

So, I need more pain--and pain in the right places--to bring me clarity. Today, with my leg pain at a very low level but my upper back in spasm, I was left with the feeling that I'm just stuck. I have chronic pain that makes my life miserable, but it's pain that there is no clear solution for. And then there was the guy on google who had debilitating muscular pain in his upper back for 10 years and is taking daily doses of oxycontin just to survive. And then there were the inevitable thoughts about my future of neverending pain and disability and horror.

Oh God, please help me to stop my mind from running in these crazy circles. Please help me to tell myself a different story. Please help me to keep my promise of cultivating faith and optimism. Please help me to stop googling. Please help me to carry out my intention of just allowing this week to unfold, rather than trying every second to figure out what the future holds. God, please give me the strength to be right here, right now.

 

One week

I have decided to take this week, to steal it out of time. I'm going to let this be my week of forgetting about the future, forgetting about the vacations we have planned and the things that I may or may not be able to do. This is my week of giving up hope--hope that I can avoid surgery, or that surgery will fix me, or that anything specific will happen with my back--and just assessing how I feel each moment. This is going to be my week of sitting with myself, putting everything else aside, and trying to make the best decision for my health and my future. I hope that by the end of it, a decision of some sort will begin bubbling to the surface.

Here are some things I plan to do during this week:

• Meditate! This is where my inner wisdom can emerge.
• Go to the accupuncturist. I want to have some sense of whether this might help the spasming muscles in my back. Plus, I somehow feel that it will help to bring me an answer. I'm not sre why.
• Exercise. I'm going to keep up my PT stretches and exercise in whatever way I can, which is probably only walking in the pool right now. But if I have this surgery, I don't want to look back and think that I gave up too soon on helping myself.
• Write. Writing has always helped me clarify my thoughts, so I'm going to try and write here every day, as long as it feels right.
• Read. Books that make me feel calmer or help me see that I am not alone in my struggles.
• Cultivate acceptance. I have to accept that my storyline of a glorious spring recovery is not happening. Things are not going according to plan, and being hell-bent on trying to mold things to my plan could lead to a bad decision.
• Cultivate faith. I'm going to be OK. I'm going to find my way through this very difficult time. I have a lot more life to live, and I am not always going to be defined by my back pain. I have made it through a lot of other struggles that felt insurmountable at the time. This is just another part of the path, and it will pass.
• Try to get on with it. Try to do my work and live my life and go about my normal activities. If I lie on the couch all week avoiding pain, I won't get to know my pain or be able to decide if I can live with it.

This plan feels bearable. I'm not asking myself to hang out indefinitely. I'm just asking for one week and, at the end of it, I can decide to have surgery if that's what I feel like I need to do for my sanity and my health. One week. Here we go.

Agonizing

Almost all the big choices in my life have felt intuitive or inevitable. I am not used to wrestling with things this way. But right now, I am really learning the meaning of the word "agonizing." Making this decision about what to do with this screwed up back of mine truly is agony. So I'm going to try and write it all down--and see if that brings me any sort of clarity.

So, the plan as of just a few days ago, was to give the back 6-8 weeks and see what happened. Give nature a little time to run its course, see if maybe things would improve on their own. Backs are mysterious things, and you just never know. If it was still terrible at the end of that period, I would schedule surgery. This seemed like a very rational plan. No one could argue with it. It was entirely reasonable. I decided that my surgeon was being overly aggressive, maybe even unethical, recommending major surgery only a week after the onset of new pain. I decided that I couldn't trust him. I read all the bad stories about spinal fusion, and all the inspiring tales of people who healed themselves without surgery, and I felt I was making a good choice. It would be crazy rush into spinal fusion because I was overly emotional or didn't want to miss my summer vacation (which will definitely be missed if I end up having this surgery in 6-8 weeks).

The problem is, most days, I don't feel like I can survive this plan. My gut tells me that this back is not getting better, and that I am merely stuck in limbo, watching more and more of my life slip away. Every day, I find myself clawing at crumbling ground, trying to keep from falling back into that awful black hole of depression. The idea of lying around disabled for another two months, and then likely ending up having the surgery anyway, makes me feel like I want to die. With the exception of a couple days, I have felt like sobbing pretty much all the time. I have not wanted to eat. I have been unable to concentrate on work--or on anything. I have alienated my husband and tried the patience of friends and family. I tried to tell myself that, during this waiting period, I would just suck up the pain and go on with my usual activities, and I've been able to do that to some extent. But, as I do those things, I feel awful, miserable, full of panic, barely able to hold it together.

I was feeling that way all weekend, and in desperation, I called a family member who I trust. I asked her what I should do, and she said, "Just go ahead and have the surgery." When she said those words, I felt the first relief I had all weekend. I can't go on like this, my inner voice told me. I have to do something. I have to take this risk to heal myself. And it is a risk. There are lots of people who have had this surgery and gone on to good and happy lives. I've talked to several of them. But there are a lot of people who have had fusion and not gotten relief from their pain, or who have developed other problems as a result. There is absolutely no guarantee that I will not be among that group. I have already ended up on the wrong side of the odds with my back, so I know it is possible. It's also possible that it will resolve some, but not all, of my pain. What if I do this surgery and end up permanently disabled and in chronic pain? What if, what if, what if?

These are the worries that stop me in my tracks, these worries about the unknown future. But where am I now? Right now I am in a place that feels untenable. Do I need to simply sit in that place and hope that an answer will eventually become more clear? Or do I need to make a bold leap based on the hope for something better than this miserable existence? I don't know. God, I just don't know.

 

Optimism: We could use a dash of that around here

I realize that maybe what I need is a little more simple than I'm leading myself to believe. Yes, I'd like to have faith that I can handle even the greatest hardship. I'd like to believe I could be like the guy in "Life is Beautiful," who made the Holocaust into a fun game for his kid even as he was being sent to the gas chamber. But maybe that's aiming a little too high for a person who is currently sitting on her sunny front porch drinking a beer? Maybe I'm not ready to buck up and face a life of unremittant disabling pain.

Maybe what I need is the simple belief that the worst is unlikely to happen. Maybe I just need to take a few shots of optimism and say: Dammit, you're going to be OK. Then I need to just give myself a break and believe it. Maybe my story doesn't have to be chronic pain and doom and destruction and existential angst. Maybe it can be: I had a big herniated disc, I got it fixed and felt better. Now, I am having another problem with a (smaller) herniated disc. I'm going to try conservative treatments and, if they don't work well enough, make an informed decision about another surgery. In the mean time, I'm going to do the best I can and accept that there are some things I can't do right now. But I'm going to be OK. I'm already better than I was the last time, and the body has an amazing capacity for healing.

I am going to be OK. Those are the simple words I need to say to myself every time my mind goes crazy with the possibilities. I need to take it like Mia did, when I told her this afternoon that my back was hurting again. I had been so afraid of telling her, had cried 18 times just thinking about telling her. I finally just said, "My back is hurting again and I'm trying to get it fixed." She looked worried for a minute and said, "Not surgery again!" And I simply said, "I hope I won't need surgery. I'm going to doctors and trying to get it fixed without that. But if I do, I'll be fine. Remember how I got better the last time?" And she said, "OK," and went on doing her homework. She was happy and didn't say a word about it the rest of the afternoon. And she gave me the strength to ignore the damned pain in my back and enjoy the time with my happy child. Because she believed that I was going to be OK.

I'm going to start believing it too. Starting now.

Faith

Faith. I realize that is what I need to cultivate right now. Because when there is no safety net, that is all you have to fall back on. Your faith that you can persevere, that you are safe in some fundamental way, that things will unfold as they should, that all things arise and pass away.

Trust me when I say that's not the kind of comfort I want right now. I want a doctor to tell me I can be fixed immediately. I want the medical literature and statistics to tell me the perfect treatment. I want a 10-point plan with deadlines and promises and notarized signatures. But those things don't exist. One doctor told me he could fuse my spine and fix me immediately. Others say that is a risky and very final procedure, and that it is extremely premature. So I find myself back in this place of being in pain, of not being sure what I will be able to do from day to day, and of not knowing what, if anything, will make me better. I am going from doctor to doctor, website to website, hoping that one of them will tell me the right answer. Instead, I discover more and more, there is no magic cure. There is only trial and error.

So I find myself grasping for the "peace that passeth all understanding," because that is the only peace I'm going to find right now. I understand a whole lot of back problems right now, and that understanding does not bring me one bit of peace. Instead, it leaves me fighting all day to keep from crying and panicking, unable to concentrate on work or a book or a TV show, unable to enjoy anything about my life. It leaves me sad and desperate and lost.

Last night, a voice within me said, "Rest in not knowing." I knew it was a voice of wisdom. I have to accept that I don't know what's best, I don't know the solution, I don't know how I will make it through this or what my future holds. I know that doesn't sound like much to rest in, but I just have to be with the not knowing. And really, that's what faith is. It's grasping that this is all too big for us to understand, acknowledging the mystery, allowing for hope against the odds and trusting that, no matter what way things go, we will find a way forward. I don't feel that trust or that faith yet, but I have to keep trying for it. Because it is all I have to fall back on.

Acceptance

What I have to accept:

• That this is happening. That wanting it to be otherwise has nothing to do with it.
• That I don't know how to fix it yet, and I may have to live with that for the next little while.
• That I don't know what's going to happen in the future, and I have to find a way to rest in not knowing.
• That I will eventually discover my path, and that it is the only path that ever has existed or ever will. My life will unfold as it is supposed to.

The plan

On Monday, my surgeon recommended spinal fusion. He presented it not as a tragedy, but as a great hope for an end to my disability and pain. He said I should make a great recovery and get back to all my activities, and that with new minimally invasive techniques, the recovery won't even be that bad. He said I could still go on the vacation I have planned in early June. I scheduled the surgery for next week and felt fairly peaceful about it.

Today, I went through an agony of indecision. This agony was greater than physical pain. I spent hour upon hour googling, reading studies and news stories and message boards and any fucking thing I could find. I read many things three, four, five times. I went for a second opinion, and that doctor recommended a more conservative approach--another surgery like the last that will, almost certainly, eventually fail. The only question is whether it will be weeks, months or years. He said that 80 percent of fusion patients do well, and 20 percent suffer permanent disability. I talked with another of my surgeon's patients--who also happens to be the OBGYN who delivered Mia--and he told me to have the fusion. I did nothing but think and talk and read and fret about my back.

It comes down to this: I am in a shitty position. I have to make a decision without knowing the right answer. I am in a place with no guarantees, with no true ground under my feet. I have to make an educated guess that could have a huge impact on my future, and simply hope against hope that I fall on the right side of the odds this time. I have to trust that things will unfold as they are supposed to, and that I am not in control here. If I were, I wouldn't be in this spot to begin with.

So here is my plan for getting my act together and finding some kind of peace. These are my rules, which are ironclad:

1. NO MORE GOOGLING. I have read every bit of relevant information on the web, and reading any more is sure to have only one effect: Driving me fucking insane. If you catch me on a back pain message board again, even if it's a thread about success stories, please shoot me.
2. Step back from this for a day. Let things percolate, but don't read about it, don't talk about it. Let it be.
3. Spend time in meditation and remembering what I have to be grateful for.
4. Get one more opinion on Thursday and then make my decision. Stick with it.
5. Remember that the present is just as valuable as the future. I don't want to make a decision that means giving up the ability to lead a full life now. Now is important. I don't want to think in terms of "getting by" for another few years.
6. Accept risk and uncertainty as an inevitable part of life.
7. NO MORE GOOGLING!

 

 

 

Bearing the unbearable

Here I am. The unbearable has happened, and yet I will bear it. Not just because I have no choice, but because I am determined. I am determined to live a good and worthwhile life, and to be an asset to the world. I am determined to give the people I love everything I possibly can. If I have to, I will walk through the fires of hell to do that.

I have reherniated my disc. I have not yet gotten the results of my MRI to confirm it, but my body is speaking a language I know well. Pounding pain in my calf. Sharp nerve pain jabbing me in the butt, hips and knees. Spasming muscles in my back. I am able to shuffle around the block, but that's about it. I will see my surgeon Monday to confirm what I know is true. Reherniation was a risk I knew about all along, and one that I have done everything possible to avoid. But I have come out on the bad side of the odds. It's just one of those things that happens. I truly don't feel I made any bad decisions along this path. I just got unlucky.

The pain is pretty terrible, and I would not recommend it to anyone. But in some ways, it is freeing. It means I don't have to fuck around this time. When you're in this kind of disabling pain, and you've been down this road before, you don't try four weeks of physical therapy. You don't wonder if you should drop $400 on accupuncture. You get an MRI and you go back to the surgeon and you get that shit off your nerve before you go fucking crazy.

I have Googled for hours upon hours (upon hours), and here is what I know. If it is a simple reherniation of the same disc as before, most surgeons will recommend a second surgery like the first. However, there is now an increased chance that it will herniate again. If it does, they will likely recommend a spinal fusion. Judging from what I have read, a good scenario for someone like me would be to do a second surgery and buy myself some years (hopefully, years and not months this time) before I get the fusion. When I first figured all that out, I had to take a valium. Jesus, that is a frightening future to behold.

But if I take one step back from it, I think, this is just life. It is no different from anything else. We all find ourselves in places that feel like the end of the world. But somehow, we keep going and we survive and we adapt and we do what we have to do--and we realize in retrospect that it wasn't an ending, it was a beginning. I see now that I have to stop thinking about getting back to "normal." There is no such thing as normal. There is only what is, and we take it and do what we can with it. This trial with my back is the beginning of a different life for me. Not one of disability, I hope, but one in which I have to accept more fully my vulnerabilities and the uncertainty that is part of human existence. One in which I have to buck up and do what it takes to help myself, even when it's terrifying. One in which I feel gratitude for what I am able to do, in which I sieze the good moments I'm given, in which I see that petty things aren't worth worrying about.

For much of the time before my last surgery, I worried ceaselessly about not being able to be the mother I wanted to be because of my back. I have even wondered, if I could have seen the future, would I have had a child? Or would I have decided that it was simply too risky, that I might not be able to give her the life I wanted for her with my broken back? (I know these thoughts are ridiculous, but there they are.) But the other night, as I felt this new crisis coming on, I realized how lucky I am to be a mother. It is Mia, more than anything or anyone else, who gives me the courage to face this. It is for her that I will keep going, no matter how much I feel like giving up. It is for her that I will face down the scariest demons. And along the way, I will teach her that there is nothing more powerful than love.

The other day, just before my back fell completely apart again, I was walking my dog through the park. There was a girl lying in the grass alone, sobbing. I asked her if she was OK, but she didn't answer. She didn't look like she was homeless or in need of medical attention, she just looked broken-hearted. There was probably nothing I could have said or done that would have helped. So I walked by, but as I went, I wished her happiness and love. I told her silently that I have been there, I have felt exactly the way she did at that moment, absolutely broken and lost and not seeing any path out. In that moment, I felt so intensely how we all suffer and struggle in this life--but also how heroic we are. How we find our way out of even the darkest places. How we get up and keep going and, somehow, we face the unknowable and bear the unbearable and find happiness and love along the way.