Learning to Fly

Presented on July 20, 2008 at
The First Unitarian Universalist Society of Middleboro

“Healing may not be so much about getting better as about
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn’t us
In order to be more whole.”
--Rachel Naomi Remen

When I last stood up here and spoke I was in the midst of a leave of absence from college, I was managing to work a limited number of hours at the Marion Art Center and was teaching theater classes one afternoon a week, I was living with my parents in Rochester, and I spoke about how to live with chronic illness and what my journey has taught me. That was three years ago and a lot has changed. I finally graduated from college with a bachelor’s degree in Human Development and a minor in Theatre Arts after more than 7 years as an undergraduate student. I got a job as an assistant preschool teacher in Newton, Mass and moved up there for the school year and will return in the fall for a second year at the same preschool. The Young People’s Theater program at the Art Center has grown and I teach three classes on two days a week and will be adding a fourth class this fall for preschoolers as well as occasional weekend workshops and extra classes. But while so much has changed, so much has also stayed the same and the past three years have been anything but easy with many ups and downs in my health and other areas of my life. And I have begun the process of going down the next path in my life and taking steps into the “real” world. While this process has been difficult and I still struggle with it on a daily basis, I feel I am finally beginning to step out and be independent. I may be doing this later than many people but I feel like I am finally finding my wings, spreading them wide, and learning how to fly.

This flying metaphor has a lot of meaning to me. The idea of flying has always felt like the ultimate freedom. Being able to just take off and soar through the sky, see the world from a different perspective, and feel the wind whipping against your skin and blowing in your hair sounds amazing. And this is a freedom I have longed for, not literally to fly but knowing that freedom of leaving the world behind and being liberated. I don’t think this is anything I necessarily thought about before I got sick when I was 15, but it certainly has all the more meaning having gone through so many years of being confined by my illnesses and conditions and, much of the time, being literally tied down to IV poles and pumps.

But the desire to fly has another, more silly and creative meaning to me. When I was probably 14 or 15 my older sister gave me the nickname Penguini. I remember clearly walking across the parking lot to our car after eating at Sam Diego’s in Plymouth for my sister’s birthday or some other event and I began walking like a penguin (don’t ask me why, just one of my silly moments). She called me Penguini and the name stuck. But it didn’t end at a nickname. I developed a whole story and persona of Penguini. And Penguini is a penguin who longs to fly. “As long as she could remember she always wanted to fly. She felt weighed down by gravity, by the land, by her solid bones. She envied the gulls and albatrosses that could spread their wings and fly high above the icy ground. To Penguini flying was freedom and she longed more than anything else to feel that freedom.” I have written the story of Penguini: The Penguin Who Longed to Fly and you can read it here.

I feel I have begun to take my own leaps and begin to learn how to test my wings and fly off on my own, but at the same time I feel hindered by the strings that connect me to the “medical” world and will not let me truly go off and soar by myself. This past year has been a test as to how well I can balance the two worlds I inhabit – the “real” world and the “medical” world, but don’t get me wrong, the “medical” world is very real, too. I have spent so much of my time over the past 11 years focusing on seeing doctors, figuring out what is wrong and how best to deal with or fix it, and generally delving deeper and deeper into the medical world.

For those of you who may not know that much about my whole medical story, when I was 15 I got sick and was diagnosed that year with Lyme disease, a diagnosis that later became chronic Lyme disease as we realized the full nature of my case. It probably dates back to when I was about 8 – 18 years ago which just seems crazy to think about. Over the few years following my diagnosis, I went on treatment, got a little better, went off treatment, got worse, then went to doctor after doctor with treatment after treatment and saw little improvement until I began IV antibiotics in 2002 when I was 20. That helped a lot and I was slowly rejoining the world but when the treatment stopped (due to my insurance stopping coverage of the IVs) I got worse again after 4 or 5 good months and the quest for a new treatment began again. Since 2004 I have had a port-a-cath in my chest and been on various IV treatments, including antibiotics, hydration, and nutrition. I’m often seen carrying around a small backpack of some sort which contains a small portable pump (an amazing invention) and the bag of IV medication and tubing that’s attached to my IV line.

I also have diagnosis of Dysuatonomia or autonomic nervous system dysfunction which affects many systems of my body; Gastroparesis which literally translates to “paralyzed stomach” and affects my ability to eat; and Reactive Hypoglycemia and Hashimoto’s Thyroiditis, neither of which have much impact on my daily life. We suspect there may be other conditions going on but I have yet to receive any other diagnosis. Some people might say dealing with all of this and struggling so much to try to lead a “normal” life isn’t fair. But I don’t think “fairness” has anything to do with it. There are difficulties in everyone’s lives. And it’s pointless to try to compare one struggle against another, to measure one person’s obstacles with someone else’s. Sure, there are times when everything is too much, but doesn’t everyone have those moments?

So after 11 years of dealing with these illnesses and conditions to one extent or another, I finally felt well and stable enough to try to take the leap and get a job, an apartment, and go out on my own to see if I could do it. This past year I did just that and I survived! I was still on a lot of medications and IV treatments to keep me stable, but I made it through the year and proved that I am capable of it. But suddenly jumping into the “real” world wasn’t easy. Rejoining society is like moving to a new country. The disorientation of moving into a new society, not speaking the language, not understanding the cultural priorities after having such different concerns for such a long time, and not having them understand you is quite a challenge. But it goes even further than that. Getting sick in a lot of ways is like going to a foreign country where you have to learn a new language with all the medical jargon, you have to learn new priorities and adjust to a new lifestyle. And after a while you get used to it. And then you decide to move to another new, foreign, more or less unknown country that you have seen from a distance but never truly existed in. The transition is difficult.

I was more or less up front about my health issues with the co-directors of the preschool and with the other teachers in my classroom and they were pretty understanding, but not the kind of understanding I have from friends in the “medical” world. I feel awkward in the “real” world. I am a stranger in that world, a place I have seen going on around me but that I have felt is largely spinning by without me. And since I was relatively young when I first got sick and my world changed, it wasn’t that I was re-learning how to be in the world, I was learning for the first time. I felt that I was suddenly thrust into the new, strange, but exciting world and having to navigate my way without feeling like I knew what I was doing. I was consciously trying not to make my medical stuff central to the relationships I was forming with people at the preschool, I made a very conscious choice to not go into work hooked up to my tubing and backpack until it became necessary at the end of the year (and it really wasn’t a big deal – 4- and 5-year olds are so accepting!). I was trying desperately to exist in the “real” world, keep the foot I had in the “medical” world balanced, and get out there and do all the things I hadn’t been able to do for such a long time.

And this is where a dilemma lies. When I’m doing well, I naturally want to run out and do things because I have been unable to do things for such a long time. I want to make up for all that lost time. And in some ways I was trying to make up for not having been a productive member of society for such a long time. I needed to run around like crazy, working all kinds of jobs (all of which I did enjoy), sometimes neglecting my health, to help myself feel a part of the world and to help myself feel worthy after so many years of feeling like I could do nothing. So I ran around, I taught preschool, I drove down here to Marion from Newton to teach theater classes, I taught swimming lessons at the Y in Needham, and I left myself little time for actually resting and taking care of myself. In a nutshell, I overdid it and went too far in the direction of trying so hard to be a part of the “real” world. And it didn’t bring the kind of connection and joy that I wanted to get out of it, it just made me exhausted and I was constantly sick with one thing or another (a hazard of working with young kids).

In a lot of ways it's scarier to be somewhat well than to be sicker and more debilitated. When you're sick and can't do much, you can expect to wake up and feel badly, you don't expect to suddenly be able to do a lot and, while crashing is still scary, it's a little easier anticipated and handled because there isn't as much to lose. But when you're relatively well and able to be working and fitting in fun things from time to time, crashes are so much harder to deal with because there's a lot farther to fall and much more at stake. If I crash now and I crash hard, how would I manage to continue working? Would I have to take time off of work? Would I be able to manage financially? What would happen to the independence I've finally gained after such a long time of being so dependent on my parents and other people in so many ways? So many things to lose.

In June I began a long and scary ordeal showing me how quickly things can change. Upon switching the antibiotic treatment I was on, I developed high fevers. The two things were apparently unrelated but happened during the same weekend so it complicated the puzzle. I don’t get fevers and these were scary high. I waited to call my PCP thinking it was just a virus, the flu, something that would pass on its own. But when the fevers dissipated only to return again just as high as before I realized something else was going on. And of course, always the puzzle, we couldn’t really figure out what was causing them. Our fear was that my port, my permanent IV line, which serves as a lifeline for me, was infected but thankfully that didn’t seem to be the case. We identified 2 infections but treatment for them brought no relief from the fevers. I am still dealing with them, nearly two months after their onset, and they are taking their toll. About every 2-3 days, often at night, I will feel the telltale signs of a fever coming on and brace myself as I see my temperature climb to nearly 104* and then slowly come down. The whole thing lasts 4-5 hours and then I’m alright, although exhausted and obviously not feeling at my best. We believe we’ve figured out what is causing them, a tick borne disease called Babesiosis that is often transmitted along with Lyme disease. It is related to malaria and is an infection I’ve been treated for many times in the past, but never with symptoms this severe. So, I will begin another course of treatment this week and hope and pray that it brings an end to the draining fevers.

This ordeal brought up the very real fear that lies close below the surface of my mind – have I come this far only to fall back down again? I know how far I have to fall now, how much there is to be lost. Those memories of my lowest times – when people (perhaps myself included) just thought I would fade away entirely. Those scary times when my confusing health picture baffled all my doctors (although I continue to do this, just in less scary ways). I know what it’s like to be there and I know how long it’s taken to come back from that.

Through the past few years I have had to begin defining myself in a different way, pushing aside the definitions that have been at the forefront for such a long time. When my life seemed to completely revolve around doctor’s appointments, medications and infusions, and spending time resting in bed or generally being incapacitated by my illnesses and conditions, I was largely defined by my existence in the medical world. Now as I begin to step out into the “real” world, I have begun to define myself in other ways. But I can never leave behind the definitions I’ve had for such a long time and I can never, nor would I ever want to, wash away the past. I have come to where I am largely because of what I have been through. But trying to create these new definitions of myself brings with it some problems. I find myself trying to push aside my role in the medical world so I can try to exist entirely in the “real” world, but this is to the detriment of myself and my health. I cannot deny the fact that I still must exist within the medical world, rather I must find the balance between the two, which is a difficult thing to do.

I love that I’m able to have this existence in the “real” world – to have a job and an apartment and be out there doing all these things that for such a long time I had seen as impossible. But I also yearn for the understanding that can only come from people who have been through the things I’ve been through. I have friends in the “real” world and they are great, supportive, understanding, but they know very little of the whole story because we simply do not talk a lot about it. Those friendships are in the “real” world and we (or maybe I) try to keep the medical interference to a minimum. But then I have friendships in the “medical” world that offer the kind of understanding and support that just cannot be found anywhere else. I have friends who have the same set-up with the backpacks and portable pumps, I have friends who understand the need to rest and how difficult it can be to feel so alone, I have friends who I feel so comfortable with I could share just about anything. These friendships run deep and I have tried so hard over the past year to keep them alive because I have been the person left behind by another who gets well and moves on with her life and I never want to do that to any of my friends. It’s difficult, but I try, and those friendships are so meaningful I don’t think they will ever truly go away.

So, how am I doing trying to reintegrate into society? I’d say I’m doing alright but I’m realizing just how many obstacles there are to face and overcome. But regardless of how difficult it is, I’m doing it. That is perhaps the most important thing to me – I’m managing to work and support myself. I worry that things will change so I’m trying to get the most out of these experiences. But at the same time I’m trying desperately to plan a future without having the “medical” world at the forefront. Right now I am really hoping to be able to move out to Oregon in a year or so. My sister and brother-in-law live there, I love the area, and I want to go to grad school somewhere on the west coast. But with these plans I’m facing the question of whether I will be well enough to actually do it, to leave my doctors behind here (perhaps staying connected through phone calls and visits every 4-6 months), to set out on my own even more than I’ve already done. But my view on it right now is that all I can do is try it. I can’t wait around, hesitate, worry that I might make a wrong decision, because there are no right and wrong decisions, there are just decisions. If I take the plunge and it doesn’t work out, it doesn’t work out and I make another decision. "Sometimes you just have to take the leap and build your wings on the way down" -Kobi Yamada. Or, As Elphaba in Wicked says:

I'm through accepting limits
'Cuz someone says they're so
Some things I cannot change
But till I try, I'll never know!

So I have to trust the instincts I have and take the leaps when I can, but at the same time I have to remember that my body isn’t necessarily up for all the things I want to do. It’s hard to hold back, but I have to try to keep that balance in order to keep myself stable enough to do the things I love to do. And I have to trust and have faith that things will be okay, no matter what happens, no matter where I end up going, no matter what decisions I make, it will be okay in the end. Because, “Everything will be okay in the end. If it’s not okay, then it’s not the end.” I will continue to build my new identity and strive for a good balance between the two worlds I live in. It may be a struggle, but I’d rather be struggling to fly than standing on the ground watching all the birds above me.