I bought a cane the other day.
When I first thought about buying a cane, I thought I’d just use it once in a while (especially when traveling by air, to be able to board early and not fight the crowds while limping). I had been feeling very pragmatic about the idea, thinking that I didn’t have to use it if I didn’t need it, but that all came crashing down around me on Tuesday night. I’d been hurting a lot for several days and felt utterly exhausted around 8 pm. As I crawled into bed, I thought, “I’ll buy a cane tomorrow.”
And I lost it. I started to cry and couldn’t stop. So I crawled out of bed, limped into the kitchen where my husband was listening to music on the computer (wearing headphones so as not to disturb me), and just looked at him with tears running down my face. He asked what was wrong and we sat on the couch for about an hour while I gave voice to all the things that had been running through my mind for the last several weeks.
I thought I had it handled, that I was coping with this condition in a very levelheaded, practical way. But constant pain is a worm that digs around in your mind and soul, eating at your resolve and laying eggs of doubt and fear. And fear was very evident as I rambled on: fear of taking a TNF inhibitor (Enbrel, etc.), fear of pain and long-term disability, and fear of having let myself down.
I was afraid of switching to a new, stronger drug. But my new rheumy gave me more information our first visit than had the old one over the course of a year. I am still uncomfortable with the idea of the drugs, but actually less afraid (although I still plan to do some serious research on the available drugs prior to making a decision).
As we talked, my beloved asked me about how long I was willing to live with the level of pain that I have been dealing with of late. Picking an age at random, he asked me if dying at 70 from complications from the new drugs was any worse than dying at 70 (or sooner) from the long-term effects of constant pain, inflammation, and bone deterioration. Does quality of life factor into my decision in any way?
Well, yes, it does. I am as afraid of living the rest of my life in this much pain as I am of dying early from the drugs. That perspective provides an entirely new realm of contemplation for me, one that seems to bear a great deal of weight.
In an interesting twist of fate, I did not feel that my body had betrayed me (as I had felt so long ago with my first autoimmune diagnosis), but rather, I felt that I had betrayed my body. That I had not been diligent enough in my diet, or that I had missed something along the way and that was why I was getting worse.
And through the fear and the tears, I also knew that when it came right down to it, these feelings were illogical and had no basis in reality. I’ve done more to keep my body as whole as possible with this condition than many people will ever attempt to, and I’ve done it substantially on my own. Yes, I have friends and family who have supported me and my decision, who have gifted me with this remedy or that, and who have listened to my rants with calm understanding. But I have had no medical support at all, and have had to do all the research and “testing” on my own. So feeling as if I have let my body down is unfair and unwarranted. Have I arrested the progression of the disease through diet and supplements? Not to the degree I would have liked. But I tried, damn it. It’s one of the reasons I have signed on to participate in the Personal Genome Project: to find the gene(s) that are implicated in psoriasis and psoriatic arthritis so personalized genetic therapies can be developed and prevent others from having to deal with this condition. I refuse to call it a “disease,” which implies an active external factor (such as bacteria, virus, or parasite). It is a condition that researchers believe has a genetic factor: once that gene has been turned on, we simply don’t know how to turn it back off again.
Of course, the least logical fear, and the one that I had the hardest time giving voice to, was the fear that taking the drugs meant that I had “failed” to heal myself in the manner by which I had intended, and that I was going to have to give up the fight and cave to Western medicine, the AMA, and Big Pharma. Those of you who know me understand that this has quite likely been the underlying issue all along (which I was also aware of the other night). My control issues, particularly when it comes to doctors, are one of the big LIFE LESSONS I have to learn. A cursory review of my life history would make that abundantly clear to even the least insightful person, and I can hear the snickering (it’s OK, I really don’t mind) from here.
It is the issue of control that ultimately has to be dealt with. For me to understand, on all levels, that I can surrender to the process and graciously accept the help that modern medicine can give me, while still owning my own life, my own body, and my own choices regarding healthy eating, will be the breakthrough that I need to achieve in order to move forward with all of this. The fact that the TNF inhibitors will effectively eliminate any food-related joint pain and swelling does not mean that I am required to bail on the diet. If I know that eating certain foods makes my body unhappy, I am still free to avoid those foods, even if I will no longer experience the symptoms of my body’s unhappiness. I can still honor what the body has told me during this process. Armed with the wisdom that I have gleaned over these last few months, I can hopefully walk the path of both worlds: accepting the gifts of modern medicine while honoring the needs and insights of my own body. I can stop resisting, and embrace the flow of life.
Maybe that’s where I have been heading all along.
