Never quite better

Testing … Testing … Is this blog still on?

Good grief it’s been a long time since I sat down and thought about anything more than what needed to be handled five minutes ago. Everything’s the same. Everything’s different. I have had so much on my mind during the past few months, I hardly know where one thought starts and another ends. It’s a blur.

That the pace of life continues to speed up as it approaches the future should surprise no one who spends their days with  small children. I keep putting off mopping my kitchen floor — which is sticky from so many dropped morsels — because I can’t decide if it is less futile to do it on Monday, so that it is clean at least one full day before my child comes home from school or to do it on the weekend, when there are more people about to help out (and help mess it up immediately). There is no end to laundry and dishes, which I can literally never get to the bottom of. Even as I do both tasks daily, I haven’t seen the bottom of my sink in months. There’s just no time or energy in me to do the multiple loads necessary to keep up each day. How do folks with team-sized broods do it? I’m exhausted.

Time and energy. Yes, that’s been in short supply this spring, which in the desert started with increased pollen counts in February because I am the universe’s cat toy. Pollen season hasn’t been this hard on me in years. ERs, immune-boosting prescription drug cocktails (mostly of the nauseating steroid variety), and weeks of bedrest have been the hallmark of the past three months. Naturally, as pollen counts soared near a 12 on the 12-point air quality scale, the nightmare of food allergies nearly pushed me right off a cliff. Down to beans, plain pasta, tea, and water these days. (Okay, there’s some occasional poptarts in there, because I’m weak … and fuck it.) I’d probably be as skinny as Kate Moss, if it weren’t for my stubborn Polish genes and the steroids the doctor keeps putting me on so I can, you know, breathe.

In short, this spring has been a real bitch.

The last time I remember feeling this bad was the spring of 2007, which is, incidentally, the same time I made some rather bold changes in my life, personally and professionally. I’m poised to do the same now. (Yes, there’s something I’m not telling you, but it will be revealed next week.) Something has to give. Actually, something is giving. My body. Things have changed during those seven years. One full-term pregnancy later, my body is healing at glacial speed, if at all. Bruises are taking months to heal. Seriously. Colds are morphing into very serious infections in record-time and then taking an eternity to come back from. The old tricks aren’t working and I’m all out of ideas. (So are my doctors.) I am slowly realizing this is the new normal. I’m getting older. The never-tiring immune system disorder is taking its toll.

I’m not going to lie, I’m angry and maybe a little bit scared. When I got diagnosed in my early 20s, I knew this day would come. I knew there would come a time when it was all going to get that much harder. (And, no doubt, this will not be the last such milestone.) It’s overwhelming. It’s unavoidable. It’s not fair. Now what?

The most practical plan is one many with similar illnesses employ — strict routine. And when I say “strict,” I mean drill sergeant quality. What they do is an exacting daily schedule factoring in meals, treatments, medication times, exercise plans, sleep, hydration, and more. Meals become precise nutrient delivery systems. Exercise routines are implemented to promote maximum success. The weekly schedule becomes over-blown with doctor visits, treatments, alternative therapies, exercise classes, etc. Like food, sleep becomes just another factor in the multi-variable equation. The mantra becomes: MAXIMIZE! As in, “Maximize results.” And, “achieve personal optimization.” It’s robotic.

I detest this plan. This plan is anathema to my spirit, my creative process, and to the spontaneity intrinsic to life. There is no joy to be had in life when your days and weeks are just a series of items to be ticked off a list. indeed, I find my friends who are so regimented to be kill-joys. Deviation becomes suspect and it’s pretty hard to schedule fun. (I mean, I already had to adopt a vegan diet, isn’t that enough?) But my rebellion, my dissatisfaction, my depression about the reality of my situation serves no purpose. I am not going to find spontaneous healing down some rabbit hole yet explored. (I’ve tried that already.) Now is the time for practical application of things that work — however incrementally. However mind-numbingly monotonous. However absent of joy. And the most frustrating part of this is that all that fastidious attention to detail and routine isn’t going to make me better. It’s going to make me functional. (There’s a difference.) I’m still going to be just as sick! And yes, that pisses me off. There is no cure for what ails me. And unless I want to continue to miss out on time with my family because I can barely breathe or am so exhausted by sickness (again!), there is only one thing to do. Submit.

Naturally, as my health is spiraling I am at a time in my career where all the dues are starting to pay off. Opportunities are coming my way. Exciting possibilities are tangible. But I keep having to cancel meetings and postpone projects. Is this how it’s going to be from here on out? Me constantly fighting my illness just to take the shot I’ve worked so hard to earn? Me lying in my bed, staring up at my ceiling, with so many ideas floating in my head I feel like they will spill out my ears? It feels like the universe keeps pushing me back down every time I stand up. And I have moments when I just feel like it would be easier to give up on dreams than to keep feeling them burning in my chest. It would be easier to just live day-to-day, checking off my health-routine list items, emptying the dishwasher, putting the kid to bed, making a grocery list — and repeat forever. Of course, the idea of giving up writing or any dreams I have therein makes me feel like going and finding an actual cliff to jump off. Not that I have the energy to. I can’t even muster the strength to sit at a computer for a half an hour. The futility is palpable.

This is why I haven’t been writing. I have had to carefully conserve my energy for just those tasks that are absolutely vital. I’m in survival mode right now. And the only thing I know for certain is that change is imminent because the way things are is not tenable. My only hope is that change brings some measure of relief.

The healing power of love

Consider this fair warning: This post is going to have warm squishy feelings and talk about spiritual matters. So if that’s not your thing, best to scroll on to the next one.

I have been doing some soul-searching lately. Well, maybe that’s not exactly right. What I’ve been searching for are answers, guidance, help, solutions to my health problems. As I’ve already shared, I have hereditary immune system disorder and was diagnosed with IBS earlier this year. In actuality, the IBS is most likely an out-cropping of the immune system disorder. But that’s all semantics, really. When it comes to my daily life — chasing a toddler 12 hours a day, being a domestic goddess, trying to remember how to write sentences at a computer at 1 am, etc. — I don’t really have time to figure out the chicken-or-egg problem of how I got here. I’m here. Now what?

So IBS has come to live with me. I am at once non-plussed (oh, another “diagnosis of exclusion”? whatever.) and, well, frightened. And mad. And frustrated. And… I think you get the idea. I don’t have time for this!

But, here is what I know about being a person who has to wrangle that nasty beast of “chronic illness”: You don’t get to decide what is convenient. You don’t get to decide if it hurts too much. If you’ve thrown up too much. If you’ve missed too many meetings or important events. Or if you had plans for your day, your summer, your year or your life. And you definitely don’t get to decide that you are somehow in control. It’s happening. Get on board. Or don’t. Either way, it’s happening.

(And before I go too much further, let me just say that I know that the chronic illness that I deal with is not as bad as many others. While I do have episodes of pain and other uncomfortable things in my life, I recognize that what I am dealing with is not nearly as difficult as MS, cancer, AIDS, rheumatoid arthritis and many others. I am not that obtuse. I realize there are degrees of illness.)

These are things I’ve been ruminating on, especially as I have been recuperating from out-patient surgery to fix an umbilical hernia (I now come with non-factory parts!), which was (I hope) my last parting gift from pregnancy. When you are laid-up in bed and your abdomen hurts, it’s almost impossible NOT to think about anything else that ails you. C-section. IBS. Then more surgery. It’s been a rocky 14 months for my mid–section. And maybe it was the pain killers. Maybe it was all that free time. Eventually, TV is boring. You’re too tired to read, but too awake to sleep. And you are staring up at the ceiling and the thoughts just roll up on you.

But I assure you, it was not a pity party. (Well, there was that one moment when I did get a little caught-up in some negative thinking. But I’m only human!) No. My thoughts kept circling around the pursuit of answers. Why is this happening to me? How can I go from surviving this new chronic problem, to living my life and being some who happens to have this issue?

Mine is a mind that often spins with questions. Sometimes I get lost in all those questions.

Why is this happening to me? What a tough question, right? But I have not been looking at it from the “why me?” perspective. I spent much of my late-20s and early 30s feeling angry about being sick. I’ve moved on from that. There’s nowhere to go with that. But there is another way to look at that question: What has changed? What is out of balance? What new variable has come into play? “Why is this happening” becomes the search for clues. It becomes a detective show, rather than a tragedy.

As you might imagine, the why question has dominated my thoughts on this issue. But what I am learning is that the why question and the how question are intertwined. “What can I learn about why this is happening?” quickly melds into, “How can I use what I learn to unlock solutions so I can get back to my happy life?” (Because I really do have a nice life going, not to brag or anything, aside from the health stuff.)

Unlike other forms of my immune system problems — like allergies or asthma — I can’t just take a pill and stop feeling the symptoms of IBS. I can’t avoid IBS, like I avoid smokey bars to avoid asthma attacks. In the past, my approach has been to trust in modern medicine. And honestly, that has served me fairly well in most cases. I’m down with science. But I also have an open mind regarding alternative, or non-traditional, forms of therapies, too. I do yoga every day. I have dabbled in meditation. And yes, on more than one occasion, I have lifted my heart to God and prayed, for help, for relief, for courage, for patience.

However, even with an open mind toward alternative medicine and non-Western traditions, I would say that I have not ventured very far into that pool. Until now. Modern medicine falls off a cliff when it comes to IBS. Even the diagnosis is one based on the elimination of all other known or possible causes. “Well, you don’t have any of these… so it’s IBS.” It’s the ultimate catch-all. It’s a professional educated guess. Not exactly comforting. And as for treatment? Well, they don’t have much to offer there either. I have some pills for nausea. That’s about it. Since “every patient is different” they can’t even recommend safe food choices. So I get to be my own guinea pig in an endless experiment of “Will this make me puke?” and, “Will this give me debilitating stomach cramps?” After six months of trying to feel my way in the dark, I’ve decided that expanding my search for answers to include “weird hippie shit” — as one of my friends so delicately puts it — is just another rock to overturn in my quest for peace in my body (which, you know, is connected to my heart and soul).

So… this finally gets me back to the real subject of this post: The healing power of love. I have been reading up on chakras lately, having decided to start my research on metaphysical and non-traditional healing methods in an arena I already had at least a passing knowledge (meditation and yoga). I admit that my pursuit of learning about chakras has been hindered a bit by ambivalence. There is a part of me that agrees with my friend that maybe this is all some hippie bullshit, like psychic surgery. But I am also really tired of feeling sick, so I try to just tell that part of my brain to shut up and keep reading. What does it hurt to read about it, anyway?

In really general (and grossly over-simplified) terms, chakras are points in the body that, when open, let energy flow through you in a healing and positive manner. There are seven chakras. It starts with the Base (or Root) Chakra and extends upward all the way through your body out the top of your head at the Crown Chakra. But, if any of your chakras get blocked, then the flow of energy is stopped like a dam. The idea is that blocked energy is what creates the environment for disease and other problems to flourish in your body.

Yesterday I read about the Root Chakra, which as far as I can tell is adjacent to your genitals but actually just under your butt (if you were in a seated position). Anyway, it is the first chakra in terms of the energy moving through your body. It is responsible for many primal needs such as safety and security and sexuality. It is where your “fight or flight” instinct comes from. Stuff like that. So, as I’m reading it talks about how one of the things that can block your Root Chakra is childhood trauma and sexual abuse. Now I’m listening (or rather, reading)! I am a survivor of sexual abuse and had some trauma in childhood. Even though I have gone through conventional therapy for those issues, this connection intrigues me.

As I keep reading, I learn about yoga moves and other methods that can help unblock that chakra. One section I almost flip right by is the crystals section. (I know, I said was going to be open-minded, but crystals? Really?) What stops me is a photo of an emerald. My daughter’s birth stone is the emerald, and therefore I have a special place in my heart for it now. So as I read on, it says that emeralds are particularly good at healing those who have experienced sexual abuse. I think Oprah calls this an “Aha moment.”

Now here comes the squishy feelings part:

If emeralds are healing for survivors of sexual abuse and my daughter’s birthstone is an emerald… Is it possible that having my daughter is healing for me? (Or at least my Base Chakra?) And since my daughter is a pure expression of the love my husband and I share — which is amplified a hundred-fold by the love we feel for our daughter — is it possible that love is what is going to heal me? I believe God brought my husband to me (sometime I’ll tell you the story of how we met, and you can decide for yourself). And I know that God opened my heart (and yes, there is a Heart Chakra), when the time was right, for me to see a path I had never considered before: motherhood. And there is no doubt in my mind that becoming a mother has been one of the greatest blessings of my life. Did God send me my very own “emerald” in the form of my daughter?

It is true that as I’ve been watching her grow up, it sometimes triggers me to think about issues related to my own childhood that I never thought about before (in good ways and bad ways). Sometimes it’s something as simple as a normal motherly impulse to protect my child from danger. And while I’m checking for open electrical outlets, I suddenly wonder if my parents did that for me (they lived on a farm when I was that age) and what might have been happening in my life when I was my daughter’s age. Sometimes it’s just watching my daughter’s pure joy for life. And I wonder how anyone could look at a beautiful child and do the kind of terrible things that happened to me.

A skeptic will tell me these are all coincidences. I don’t see coincidences here. In fact, I am starting to see some light in the darkness. What I see is evidence that maybe God answers our prayers when we aren’t looking or in ways we don’t readily recognize. Sometimes miracles come in cute little packages, indeed.