Thursday, December 10, 2009

Staying In Touch While I'm In My Tortoise Shell

I've been desperately struggling with how to address one of my biggest sources of stress these days: how to keep in touch with those I love. The brain fog never lifts long enough anymore for me to truly write blog posts that I think make much sense, so I hope you'll bear with me as I try to communicate with you how much you mean to me! I know I repeat things sometimes when I'm brain-fogged or don't say them quite right, but I really needed to write this to you.

I'm writing this post because it's so important to me to let you know how much I care about you and your lives. I've struggled with finding the 'right' words, but have opted instead to write a vulnerable, heartfelt, authentic, and fairly unedited post.

As most of you know, I'm a people person. I love to have long conversations (email, phone or otherwise) about all sorts of things. Being engaged with others has always been a source of energy for me. I've never been good at having lots of alone time. Now I don't have a choice. I'm too tired and exhausted to do anything but rest.

Yet here I am with this illness that is incredibly isolating and lonely. Since starting the IV antibiotics the struggles with isolation and loneliness have only been intensified.

As the treatment progresses, I continue to have less and less strength and energy. Needing and desperately wanting to reach out to others is trumped every day by the physical demands of treatment. In the coming months (probably 10 more at least!), I know that the demands on my physical body to fight the Lyme will only become greater.

I spend a lot of energy right now worrying and stressing about the fact that I'm not able to keep in touch with folks. How does one deal with having to let go of so much because of the physical demands of treatment? How does one learn to fully receive? How does one let go of guilt and frustration and fear and replace it with only love? How does one stop feeling that being sick is selfish? What's too much to ask of those we love? How long can I keep asking people to stay the course with me?

I know I need to be processing things, talking things through, etc. yet I literally do not have the energy.

What I'm learning a lot about right now is letting go, trusting that people will be there a year from now when the worst of this is over. I'm not very good at these things. I never feel like I'm 'enough' to others, I feel guilty about my illness. I spend way to much time apologizing for not being well enough to keep in touch, help out, or whatever else I perceive those I love need. I apologize to my mom daily for something I feel I guilty about as the result of being sick. Nurturing relationships is one of the things I actually feel like I'm good at and that I can give to this world.

The lessons I'm learning right now are often more challenging than the daily physical demands of treatment. One thing I know for sure is that I am going to emerge from this experience having gone through some serious personal growth! And yes, I see the opportunities and the irony in all of what's going on to challenge me in big ways spiritually!

So for now, one of my biggest lessons is learning to let go and trust in a more complete and vulnerable way than ever before.

Your news and photos from the outside world--in the form of emails, snail mail, texts or FB--often gets me through my days. I get back from another grueling doctor's appointment or wake up from a fitful sleep and find news in my inbox. It pulls me out of my small world of illness into your world. It brings me into your life and keeps me connected to you. Even the shortest little hello can change my perspective on a day.

The time you take to connect with me is such a gift and I don't know how to ever express how much it means to me. I'm writing this post with the intention of letting you know how much your news means to me, not as a way to make you feel pressured or obligated to keep in touch. I just need you to know how much your world matters to me.

Because I can no longer write much in terms of emails, I'm asking you to trust that when I respond to your email with "Thank you!!!!" or "I really appreciate you sharing what's going on with you." (Yes, I want the good and the bad), I'm not being short or dismissive. I'm heartfelt in my response. I'm letting you know I've read your email and it's been received with so much love. I'm letting you know I probably printed it and read it over multiple times (since it's getting so hard to look at the computer screen these days). Hey, I've always wanted to learn brevity--maybe this will be my year. I so admire people who can say one sentence with such POW! they sum everything up! And if you don't get a response it's not in any way a sign that I'm not reading or sending thoughts your way.

I am also genuine in saying that while I cannot offer you long email support when things are tough or you need extra prayers, I want to know what is going on because I want to send love and good thoughts your way. Are you having angioplasty? Are you having a new baby? Are you feeling overwhelmed? Are you buying a new house?

At the end of this year of IVs I'll emerge from my tortoise shell still being a part of your world. I'll know some of your news and I'll have remembered it, even if I couldn't write back.

On my end, I hope so much to be able to continue blogging, but even that has become increasingly difficult. It's not the same as a true conversation in the way I love most, but at least it keeps our worlds connected to some degree. I hope to use it somewhat like a CaringBridges site, so that I can answer your questions and fill you in on what's going on and stay connected as much as possible. When I write my blogs, I often keep in mind the questions you've emailed me like: How long will treatment last? How are you feeling? How will you know it's working? So don't stop asking questions! :)

Over the last few weeks I've thought a lot about how to keep in touch (as in obsessively)--and what would be healthiest for myself and for my friendships. I have decided to get a cell phone that has a keypad for easy texting and add texting to my plan for quick check ins, so if you're a 'texter' this is a great way for me to get news when stuck in bed! The other day a friend sent the heartbeat from the ultrasound of her baby and I just about melted!
I debated getting a phone with email and FB, but then felt overwhelmed at the thought of learning how to work a new device. If a time comes when I'm ready, I might think about something like an iPod Touch which would at least be easy to hold and read emails from anywhere in the house without needing to be at the laptop. Right now though, I'm just not in that place. I'm afraid that I'll check my new gadget obsessively for mail! It's seriously tempting though...

I'm still trying to follow folks on FB as a way to see pictures and news, but may be using that silly "Like" button more than leaving comments. Now, they just need a "Dislike" button. Even keeping up with FB is getting harder though.

For much of the time I've been sick I've been able to keep up appearances, push through the fatigue and the symptoms. These days my body gives me little leeway to do so. And I need to focus my energy on what will hopefully result in significant healing.

While I continue to be at peace with the decision to do this treatment and to forge ahead as aggressively as I can, it doesn't mean it doesn't just plain suck! And not being in touch is one of the hardest things for me. Obviously I knew on some level that I wasn't going to be able to keep in touch with folks, but I was totally unprepared for the emotional angst this would cause me. In some ways I feel like I was more prepared for the physical changes.

Thank you to those of you who over the years, and especially over the past seven weeks, have stayed the course with me, continue to 'get it', and sent me your heartfelt news and emails.

You are in my daily thoughts more than you will ever know. And your news is treasured more than you will ever know. I may not be the best 'pray-er' but I'm great at sending love and energy and good thoughts your way.

Thank you for your continued love and support. And thanks for reading my ramblings!




Mary Dunlap said...

Hey there! Happy to hear that you are trying a new treatment. As grueling as it may be, this may just be one of the best things to happen for you. Take it day by day, and good things will come. That's what I tell myself too! Thinking of you. Mary

Kristen said...

I'm still out here! I'll keep bugging you regularly. In fact, you inspired me to send you pictures. ohhhh boy!

On the serious side of things, isolation has got to be so tough on someone as outgoing, thoughtful, and friendly as you. It's brave of you to put your feelings out there for us and to remind us of one of the most difficult aspects of your treatment - the emotional side.

magpie said...

You know we'll be here when you come out of the tunnel, right? We're all still here, not goin' anywhere - even the ones like me who've turned up late to the party. Just you get yourself through this as best you can, and we'll keep the stories coming.
Love you, girliecue! (that's like curlycue, only without the frizz)

Katherine said...

Please know that you are loved--even when we don't connect as much as we were earlier this year.

Emily said...

Oh, Emily. I wish that you never felt like you needed to apologize when things are hard for you. You know everyone who cares about you understands why it might be hard for you to blog, e-mail, etc. You have so many people who are thinking about you and wanting the best for you.
I will look forward to noticing the things that you like on FB, and I will definitely be around next year, still cheering you on.
Hugs to you!!

p.s. I am huge on texting! :)

Skinner Family said...

I'm huge on texting so if you need to text you.... I will! I think you rock for writing that blog! I know you are reading and keeping up on fb.