Journey to the Center of the Earth

There's a reason why airfare to Phoenix is so very inexpensive in August. It's called heat. Never have I felt such seriously brutal heat.

Whose brilliant idea was it to establish a major city in the middle of the desert?

Actually, I had a wonderful and lovely time in Arizona, but that had nothing to do with the weather and everything to do with the reason I was there. I was there to visit a friend, a friend I barely knew according to conventional measures, yet chronology and geography aside, I realize I've known her on the soul level for quite some time.

I met my friend on the Internet. The amazing thing about the Internet is that it continues to make the world more accessible. My friend and I met on a forum where we were discussing the nature of hope and the concept of trying. We took up writing long, soul-searching email messages wherein we discovered that we had laid the foundation of a spectacular friendship.

When it came time for me take a vacation, there was really no decision to make about where I would go. It wouldn't have mattered had my friend lived in Maine, Alaska, or Arizona. With the possible exception of Alabama or Mississippi (humidity), I was going to go wherever she was.

After a week in Arizona, I realized that spending time with the right people is what's most restorative about vacation. The location is almost irrelevant when you're in good company.

My vacation was fabulous.

The conundrum of emotional independence

In the course of managing my illness, I had to make some difficult choices about restructuring the relationships in my life. Some relationships I kept because they were fulfilling and enriching; others had become if not stale, then definitely more of a habit than an actual friendship. When you have a limited amount of energy and focus available to you, you need to cull from your life the things that no longer enhance that energy.

I do not regret my decision to trim down the number of people in my life. It was a healthy and necessary decision. In addition, I’ve also found it necessary to dramatically cut back on how much interaction I have with coworkers and other peripheral people in my life. I can’t pretend that these are true friendships anymore. My doctor once told me that friends are friends and coworkers are coworkers, and it would benefit me to not confuse the two. In other words, the friendships you have at work are actually nothing more than surface relationships, and to go further, you run a hazardous risk of exposing your most personal secrets in a much more public arena.

Again, it’s OK. I am comfortable enough with myself that I don’t need to validate my worth by way of the number of people who are close to me or vice versa. Here’s the thing, though. When you partition off the different parts of your life with such severity, it becomes hard to talk to anyone at all. If I tell you about my sleepy weekend or mention that I have blood work scheduled for today, you’ll probably want to know the details, but I’m not comfortable talking about more.

I’m a good listener, but hard-pressed lately to feign interest in people with whom I have no real emotional connection. That kind of relationship should be a two-way arrangement, but I’ve found that very, very few people are willing to give as they get.

I am lonely and I feel emotionally isolated. I have nobody to talk to anymore. I have no right to complain, I understand that. This is a situation I created around myself when I fired my former friends; now, I have to live with the consequences. Since I’m not interested in finding new friends, there seems to be no solution.

All too often, we only skim the surface of people. The surface is safe. Superficiality entails no risk, be it emotional or in challenging thought. If you really go deep with people, you might be exposed to ideas and realities that are just too intimidating and uncomfortable to cozy up to. I’m not willing to go either way on that two-way street right now. Not only can’t you come in (although I’m sure you weren’t planning to try), I can’t listen to you, either, if it means I might have to expose myself in the process.

Is there a solution to this conundrum? If I stop talking, can I stop feeling, as well? I think that’s the only way this is going to work for me. If I can eliminate emotion from myself, then I won’t have anything left to say beyond facts—information, nothing more. Actually, a lack of mood, a lack of emotion would take care of a whole pile of life’s snags for me.

Mr. Spock. Data. Witty, insightful...emotionally unendowed. Perfect.

Blessings counted

If you ever want to know who your true friends are, get sick. Let yourself be taken over by a stigmatized, difficult-to-understand illness that requires patience and compassion on the part of those around you. Perhaps you think that your friends will rally around you and share positive energy with you. They'll check in with you. They'll reassure you that they love you, warts and all. They'll send you encouraging messages and they'll call just to check in and see how you're doing. They'll tell you again and again that your wellness and survival matter a great deal because your very presence on this planet makes the world a better place. Or, you can brace yourself for what really happens.

Anyone with a neurobehavioral illness can tell you about the reality of relationships amidst the chaos of illness. While you are trying to keep yourself moving forward as you push past medication side effects, outrageous medical bills, doctor appointments, physical discomfort, and the stress of not wanting to go on, you may well find that you are walking that road alone. Very alone.

Is it human nature to abandon even the people we love when the situation becomes awkward or uncomfortable? For some people, it is. When they are used to knowing you will be there to listen, to help, to support, they are there, too. When they know they can count on you to be fun and funny, articulate, level-headed, and nurturing, they'll be there. When they know you can always come up with something interesting to do or to talk about, you will not be alone. However, you may be left grasping for explanations when you realize that if you don't fit your usual image, when you are not able to sustain the personality you have when you are well, when the going is difficult, painful, slow, and unpleasant, even the people you trust the most might bail out. Even worse, when you start to stabilize and heal, they may reappear, expecting things to be as they were before, because surely the coast is clear and your ordeal hasn't changed you a bit.

This situation isn't unique to people with neurobehavioral illness or depression. Ask anyone who has lupus, cancer, fibromyalgia, or chronic anything; all will tell you about the friends who were there and the friends who weren't anymore.

Someone told me that the reason people act this way in the face of discomfort is because they don't know what to do or say, so they fade back. They can't empathize enough to put themselves in your place because that is too frightening a thought to even contemplate. They can't imagine having to change and adapt to the new you, and anyway, it is far easier to walk away. In response to this, I say bullshit. You don't have to say the right thing or even anything at all. You just need to show your solidarity and keep reiterating that you care. Unless, as it turns out, you don't.

There is another side to this issue of friends. There is the story of those who stay, those who tenaciously hang on with you for the harrowing ride and for the long haul. In my case, I have been able to count those people on three fingers, and I am married to one of those. And then...there is a fourth person who entered my life amidst the fray, and I'll get to that in a moment.

Going through the life changes brought about by chronic illness really does set the stage for people to show their true colors. For me, much of this experience was devastating, at best, and disillusioning at least. But then, I realized that a dedicated spouse and two fearless, unshakable friends may be enough to get you through that long, dark journey of the body and soul. My love for these friends has gone to a level deeper than I ever imagined, and I know that these friends understand that despite the circumstances that have transformed me, ultimately, I am still me, despite those profound changes.

Sometimes, the cosmic forces send someone to you who you never saw coming, but who you needed more desperately than you knew. I am not religious, but I do believe in karma and cosmic blessings. When my struggle left me wrung out and wasted, I depended heavily on an Internet forum for support. Through this online community, I met one of the most special people to have ever come into my life. She didn't know me, yet she did--she understood me. She took the time to listen and to share her own experience as a means of showing me a way to understand my own. By way of the Internet and email, we became...friends. The real kind. The kind you keep, the kind you work to keep because to do otherwise would be an unconscionable waste of love.

Her birthday was this week, but I was the one who received the blessing and the gift. My newest friend came from out of state to meet me and to tell me how important this friendship is to her. We were together 12 hours, but it felt like a moment. It felt like we had always been there, together, laughing, talking, understanding. In an almost Hollywood-scripted coincidence, my other soul friend flew into town for a business trip on a moment's notice. For a short time, the visits of these two friends overlapped, and I sat there, wholly conscious of the love in my life and the blessings pouring over me. Perhaps even more importantly, at that moment, I realized I was letting go of the bitterness and anger that had twisted into my core. I could see that I no longer had any use for that kind of resentment. My friends were here, and I hoped that I would always remember to be present in their love, to never take it for granted, and to always, unfailingly give whatever I could whenever I could to be the best friend possible to these two women, my husband, and my other remaining friend, who also happens to live in a far-away state. I am responsible to hold fast to this precious treasure.

Divine providence is a thing of astounding beauty.