…and that is not even a vague relation to “oops, i did it again”, although maybe the sentiment is about the same, How. HOW? Did i wind up in yet another situation that is harmful, or at least not in my best interest, AGAIN. By my own poor choices, my own insistence on hiding my head in the sand and leaving my ample nether regions ripe for kicking by even the most miniscule of perpetrators. This time, it was not me giving my power to other people, hoping they would just please, please like me…in that special way…in that more than just a friend way. No, this time it was me alone sabotaging my physical condition and continuing to make excuses for it, even once the consequences began to show. What the fucking FUCK is that all about.
After falling all over the place for the past couple of weeks, and having the inability to walk upright for more than a few hundred steps for at least the past month, I finally had to admit that the medical degree conferred upon my by Mr. Google might not be entirely adequate to self-diagnose the cause of this. I still consider myself to be a reasonably intelligent person, but continue to acquiesce to fear and stupidity as dampers to whatever navigational abilities I might have.
So…my right hip has been bothering me for more than 10 years. Mostly this was a small and very minor complication, and despite knowing that I have a progressive neurological disease, I was quick to brush that huge red flag warning and attribute the pain to obesity, back problems, incorrect sleep habits, leaning on one side too much when using the laptop in bed, and…aging. One would think that after more than a decade of this bother, I would take that to my neurologist and at least say ‘what up?. No. I struggled and finally began to suffer with the reality of the situation until finally it began to interfere with daily tasks, like walking the dog and avoiding a fecal catastrophe in my living space.
Not unrelated to this fiasco, I have been a very, very – VERY – bad girl over the course of the past year, or more, regarding said medical reality. I have not seen my neurologist in all that time because, well, ummmm, she seemed to be quite upset with me at the last visit because (my story) I had gained back all of the weight I had lost previously. So, it’s her fault that I was too scared to go back when I became symptomatic again. Yup, that’s the ticket. Blame somebody else. Well, but then there was the insurance mess…and the depression mess…and the generic Ann mess. Let’s blame anything but my lack of prioritization of an issue related to my wellbeing, my quality of life, and maybe even my life itself. So all together, I made the incoherent choice to simply stop taking the disease modifying medication that was prescribed. Mr. Google said that sometimes these situations prove to be so minor they need not be addressed over time. And I have a friend who is only slightly older than I who is no longer taking any medication at all. So there. All solved for me, right? NOT.
A few nights ago, while I was still mulling the rudiments of this analysis in my feeble brain, it occurred to me that I have never fully accepted this neurological disease and lived as though I have a disability, And it is a disability, not by my own estimation, but by the established standards of the medical and insurance industries. But of course, I am smarter than all that. I can make it, I can do it, don’t need any help. Same as it ever was.
But it’s not the same as it ever was. There are cellular processes going on inside my body that I can neither fully understand nor control, and denying that reality doesn’t change the fact that I am wholly out of control of these circumstances. And still I continued to make excuses for myself – if I just lost weight, got more into shape, went back to my exercise routines, took another supplement this would all be reversed. Not so quick, missy.
This last acute patch of difficulty that started about a month ago when I started having back pain so severe that I was bent over like a semi-colon after walking more than a hundred paces. This was interfering with the canine relief project, but also with just walking short paces anywhere. So, when I crashed to the ground at the Fellowship several days ago – and couldn’t get up – I was a little befuddled but still not willing to admit it could be anything to do with my central nervous system. Just typical kluttz behavior, of course. Fortunately someone came out of a room nearby and helped me to right my ample arse, and so I went on without further issue. Well mostly…I had to make sure I was intentionally compensating for any unsteadiness and imbalance by chanting ‘heel-toe’ for every step to make sure I was walking correctly. That worked for a short time.
After winding up on my buttocks, in the grass fortunately, I was beginning to get the impression that my way of dealing with this was not working. It was not going away, it was not improving, and it was becoming dangerous. As I said previously, I had not seen the neurologist for almost 2 years, and when I came clean about what was happening to my therapist, she did everything but come through the video call and threaten my life if I did not call the neurologist. So I did.
Unfortunately, it has probably been too long since I’ve been there to be treated as an existing patient, so I was given an appointment more than 5 months away. I requested to be put on the list that would be taken first if there were appointment cancellations, and so I wait. It’s nearly Halloween, and this is definitely trick and not treat. In between chastising myself (well, actually bludgeoning myself internally) for letting this get so unnecessarily out of hand, the symptomology ramped up just a bit and I found that I could add neuropathy to the list of realities. My right foot and ankle began to go to sleep during a meeting, where I was seated, and progressed to mild numbness in the foot. OK, that got my attention, but the notification wasn’t complete. I was still able to walk mostly normally to leave the meeting, but after starting my truck I realized that not only was there numbness in the foot and ankle, but on the bottom of the foot. That was actually a huge problem, since I quickly realized that I could not fee the brake pedal and stop appropriately. That was definitely not good.
I panicked when I got home (safely, but with maximum effort), and began seeing a future of having to take the short transit buss everywhere, if not being locked into the ivory tower of a 3rd floor apartment (on which I had just renewed my lease). This is it. This is where my worst nightmare comes true – I fall down in the apartment, can’t get up, and die there. When I am finally discovered, the dog has eaten my nose and it’s entirely…unpretty. Not good.
So, back to Mr. Google for continued education, I nosed around, rejecting certain things, thinking my way through certain others. Finally, FINALLY, as in finally Dorothy realizes it was all just a dream, I ran across a search result that mentioned hip pain and neuropathy as a symptom of central nervous system damage. When I dug into that topic only a few inches, there it was. It was totally related, and I wasn’t going to fix that by ignoring it, or willing it to improve, or just staying in bed for days at a time. And the dog wasn’t going to get outside by any of those ineffective means.
So, I grabbed the cheap foldable cane I’d purchased a few years ago and rarely used, and took it with me to walk the dog. I didn’t use it, because somebody might see me (*gasp*), but after the pain in my back began to amplify I was beaten into submission. Once I used the cane to walk to the dog fecal elimination area, There. Was. No. Back. Pain. Are you kidding me? That was all it took, a relaxation of the ego chains to use the cane? Yes, Virginia, there is a Santa Claus but Ann refused to let him enter the house and give gifts. The new practice has not entirely eliminated the grumbling hip pain, or the nagging numbness in my right foot and ankle, but it was entirely resolved the issue of walking ben over at the waist in excruciating back pain. The numbness in the foot is neuropathy, and I can live with it if there’s nothing to be done about it. There may be, but maybe this time I will take a medical professional’s advice before trusting my own diagnosis and prognosis.
OK, so a solution only took a decade and much denial to come to fruition. In my defense, I do still have a lot on my plate – the asshole dentist who owes me $40k, running out of money sometime soon, applying for social security months too early to ensure maximum benefits, feeling incompetent about everything. But at least I am not 100% assured that I’ll wind up on the ground after walking 200 steps. Or less.
This relieves the abject panic, but does not resolve the entire situation. It has, however, given me a bit of hope that I can remain primarily independent and maintain a maximum of autonomy and bodily agency. I will come clean with the neurologist, and act like a big girl if she remains snarky with me about my weight or my poor decision making. I hope they call soon to schedule me sooner than April, but even if not, I know that I can make it with the cane. I will just have to suck it up and deal with letting people know that I am having some difficulty. I am still not comfortable in telling them all of the intimate details of the neurological disease, but I can truthfully say that I am having back issues and the cane helps to relieve the symptoms. Maybe I am getting close to telling people the truth about everything, but not yet. Maybe, however, I have made the necessary progress in telling myself the truth. It is what is is, and that’s all that it is. My conscious self and ego are just not in control of how this whole thing plays out, and I just have to accept that. I also need to accept the fear that made acceptance so daunting. Nothing about my current health situation deprives me of the right to be a human who makes mistakes. Sometimes big mistakes. Sometimes ridiculous, idiotic mistakes. But, I can be forgiven and I can learn and keep going. There was getting to be a lot of feeling that I couldn’t go on in any kind of tolerable status. Not any more.
So yes, there is still gratitude in this set of affairs. I can make this work, I do not have to clench my teeth and suffer. There is a solution. I have to believe that, or be ready to give up hope of anything turning out right, or equitable. There is much that is right, and more than enough that is equitable. I don’t have to sulk over not deserving this. As we say in 12-step recovery, if we got everything we deserved based on our behavior prior to recovery, most of us would be pushing up daisies.
So. I am still my mother’s savage daughter, who will not cut her hair or lower her voice. There is still hope for happiness. Everything is as it should be, including me.
So there.
The Sound Hole 