How can I not love them?

This is a short video I took the other day with my cell phone. My preschool class slipping and sliding around on the ice and having a ball! (The girl who comes up to me and tells me her hat keeps falling off is a kid I have a very close bond with.)



Yours,
Penguini (aka Miss Annie)

Surviving

I figured it was about time I wrote something else, regardless of how brief it might be, to put up since my last blogging was pretty depressing. First let me say that that previous blog entry reflects a lot that I often don't verbalize or write about, especially in any kind of venue where many people can read it. It therefore may have shocked some people because I often seem like a very upbeat, optimistic person who doesn't let anything really get to me. And in some ways I am that person.

But in many ways I think that is a persona I put on for the sake of others (and to an extent for myself) to make things easier. It's my survival technique, I guess. Well, one of them. It is easier to go about my life if people see me as okay with everything because then they are less likely to overstep their bounds and hover or go in the opposite direction and run away, thinking I'm just too much to deal with and too intense. And I try not to let things get to me. But it's inevitable that things will catch up with me and, sooner or later, I will have trouble dealing with it all and just need to shut down for a while. When this happens, I have to become even more introverted and usually isolate myself because it takes everything I have just to deal with myself, I can't spend any energy dealing with other people. I guess in a way I have to be selfish for a while. To the outside world it might look like I'm spiraling downward into a pit of despair, but it's another one of my survival mechanisms. I guess I've developed quite a few since I've been dealing with all of this for more than a decade.

I guess what I want to say more than anything else here is that somehow I always get through what I have to get through. I survive, plain and simple. I don't want to live my life in survival mode all the time because that isn't really living. But sometimes it takes everything I have to make it through the next day, hour, or minute and all I can do is go through the motions until things get easier. I don't need people to hover around me, afraid I might break if they turn away for a minute and leave me on my own. But often this is the opposite of what I need. I handle things best when I have my space. It's really only when I'm feeling relatively well that I can really handle interacting with people, especially people who, as well-meaning as they might be, cross the boundaries that I try hard to lay down without having to specifically state them.

And when I'm not feeling well and find it hard enough to just deal with and take care of myself, it feels like a seemingly impossible task to deal with "healthy" people who just don't get it. This isn't all "healthy" people, there are some I can handle in small doses, but so many people either don't get it at all or, even worse, think they get it and can't understand why you don't jump at their suggestions of how to make yourself better. I guess right now I feel a little bit between two worlds - the "healthy" and "sick" worlds. But it's a lot easier for me to relate to those who are, or have been, seriously or chronically ill. In many ways I feel like that world is and always will be much more my home.

The problem is that it is unfortunately a home that exists for me online more than physically around me. So I have to settle for e-mailing, IMing, posting on message boards, and interacting with some of my best friends without seeing them in person more than once every few months, if that often. I'm okay with that, although I wish it was different and I could live in a community with others who understand what it's like to be a young adult dealing with somewhat unusual circumstances. I would be even more okay with it if those physically around me (and I'm mainly talking about non-family members) understood that I am living the best I can and their suggestions, while good-intentioned, are for the most part completely unhelpful and can even be hurtful because I feel I am being judged. (Those of you aware of a recent situation may know what (and who) I'm getting at with this.)

So if you are one of the people that I see on a regular basis and I seem to be struggling more than usual, please recognize that I'm dealing with things the best that I can and allow me to go into survival mode for as long as I need to. Often the more people push, trying to get in and find out what's wrong, the more I withdraw and it ends up backfiring. Try to recognize the boundaries I draw in the sand and give me that space to do what I need to do. Eventually things get a bit easier and I can come out of survival mode, at least for a while. And if you know someone who is in a situation similar to mine, please refrain from offering advice unless they ask for it. I guess I can't really speak for others, but I know I'm not alone in feeling that unasked for advice is frustrating to deal with. Trust that we do what we can and we (usually) know where we have to draw the line. We survive. And hopefully we get to throw in some real living every now and then.

Yours,
Penguini

Really Struggling

I am really struggling right now. I don’t know exactly how long things have been kind of brewing under the surface, how long I’ve been about ready to burst and feel overwhelmed by everything, how long I have been ignoring my real feelings and just trying to convince everyone else and myself that I’m okay. But I guess that doesn’t really matter now. Looking back, I think I’ve been almost constantly close to a breakdown since before I was in the hospital - when I was so worn down by the fevers and everything else with the infection. After I got out of the hospital in mid-November, I kind of hid my head in the sand and tried to ignore the medical world. I recovered from the staph infection which was a big relief but that didn’t mean that everything was suddenly fine. Things are not fine. They are far from fine. And I just don’t want to deal with it anymore. I don’t want to live around IV schedules. I don’t want to be so exhausted everyday that the thought of having to get up in the morning is painful. I don’t want to have this line in my arm, to be awaiting a call from the surgeon to have a new port placed in my chest, to feel like I can never truly be free from medical contraptions because there is always some foreign tube inside of me.



And I’m beginning to look towards the future with doubts. I don’t know how to really explain it other than saying it seems dim, foggy, unclear, and I am unsure if I will ever feel like I’m really living my life rather than surviving it. And even more difficult, I don’t honestly know how long my road will be. There are times – days, hours, even just moments – when I feel like I will not be here to grow old and grey. There are times when I don’t want to be here. And I don’t know which is worse. Not wanting to be here just brings thoughts that it really wouldn’t be so bad to just give up fighting and let go. I am in so much pain. Beyond anything I reveal to anyone, probably beyond what I allow myself to think about. I have been through so much and I just don’t know if I can muster up the strength to continue on like this for years and years to come. It’s too much sometimes. And on days when hope seems far away and I feel so alone, I wonder if it’s worth it.



Today a seemingly stupid, insignificant thing set me off. After a long morning and afternoon of church, a Parish Committee meeting, and errands of all sorts I came home really looking forward to getting to eat some of the leftover pizza I had made last night – a pizza I had made for myself after making one for my sister (I gave her certificates for homemade pizza for her birthday). But when I got changed into my comfy pjs, ready to settle in for the rest of the day, and went to heat up my pizza I discovered it wasn’t there. I asked around and my sister admitted to eating it for breakfast. This was a pizza she very well knew I had made for myself and without even asking – no text message, no phone call to ask if it was okay – she and her boyfriend ate it. It seems rude, disrespectful, and even if it was not meant to hurt me, it is hurtful that someone would disregard my feelings and do something that they probably realized might be upsetting. It is all made worse by the fact that when I made the pizza last night, I was feeling sick and really not up to making pizza at all. But my sister had asked to turn in one of her certificates and get a pizza last night so I went out to the store for her requested toppings, made the dough from scratch, and made her the pizza she asked for and then, with some of the leftover dough, made one for myself. The precious energy I invested in this endeavor was for her with only a little expended on myself. Of course she didn’t know that until I told her (in a text message) but regardless of that, I was very upset and immediately got back in my regular clothes, borrowed my mom’s snow boots, and went out for a walk because I didn’t want to be here anymore, which I mumbled to my brother as I left the house. And as I walked, I was thinking, “What do I mean that I don’t want to be here anymore? Do I not want to be in the house? Or do I truly not want to be HERE – on the earth, alive, fighting, dealing with all this crap?”



I walked. I texted with my sister to let her know that I was very upset about it but she mostly just jumped down my throat for being upset about it and there wasn’t anything she could say that would make me feel better about it. In my life lately, I’m finding few things that I really look forward to. And as seemingly insignificant as it may seem, I was really looking forward to eating that pizza. It was a little thing, but it kept me going as I ran my errands. I was already exhausted and somewhat upset when I got home (not upset about anything specific, just everything very close to the surface, about ready to bubble over) and then to realize that the little thing I was looking forward to was not there waiting for me…it was too much and I broke down.



As I walked in the bogs, I let my thoughts and tears flow. I cried in anger – towards my sister for eating my pizza (it sounds stupid now), towards this disease for taking so much from me, towards myself for letting things upset me in the first place, towards my body for betraying me and allowing all of this to be so bad. I cried in grief for all that I have lost. I cried because I don’t want to be here anymore. And I cried because I want to be here so badly. I took some pictures with my phone and when I looked back at them I got to some pictures I’d taken of the kids at the preschool and I cried at those pictures, thinking how I care about those kids but don’t want to go back to work. Thinking about how much those kids care about me and how much I don’t want to hurt them in any way. I cried because I don’t feel like I belong anywhere, I don’t want to be anywhere; I just want to be able to go off by myself to some quiet place and leave everything else behind.



I tried to think of someone I could call to talk about all of this, and came up empty handed. I have some friends who kind of understand – friends from the “medical world” – but no one I felt I could call up and cry over the phone about pizza without them thinking I was stupid. And now I’m crying again as I write this and I can’t figure out what I’m crying for, there are just so many things all jumbled together and I’m so tired of all of it. I don’t want any more treatments, no more pills, no more infusions, no more tubes. But I know that if I were to truly stop all my treatment, my quality of life would be gone, I would be totally disabled, and I don’t know that it wouldn’t go on for years and years like that – pain, exhaustion, confusion, nausea, palpitations, sweats and chills, everything I have been dealing with for years and years but on a greater level.



I feel like I am rambling at this point. I don’t know that I’ve written what I wanted to write. I don’t even know what I wanted to write. I just needed to write something. I don’t feel better. I feel like there are still so many tears to cry tonight, so much to cry over, so much to think about, and in some ways, so many decisions to make. I am trying to decide how much I want to fight; even though I know it really isn’t a decision that will end with anything but my going on to do what I have to do. Part of me wants to just rip the PICC line from my arm and give up. And part of me wants to pump myself full of all the medications I can in an attempt to regain any little bit of my life that I can. I don’t want to feel like this, but I can’t help it. I want to be the happy, hopeful person that so many people see me as but I wonder how much of that is really me and how much is a guise I put on for the sake of others and to trick myself into thinking that I’m okay. But I’m not okay. I’m far from okay. And I don’t know when I’ll be okay again.

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.

Penguini: The Penguin Who Longed to Fly

Penguini was a penguin. Her real name was Penelope Penguin but when she was very young she had gotten the nickname Penguini from her sister, Pamela, because she loved to try out magic tricks. Penguini, Pamela, and their parents, Paula and Pablo Penguin, lived in a cozy igloo in the chilly Antarctic ice near the South Pole. Penguini loved to play with her sister, she loved to go sliding around on the snow banks and ice flows, she loved going to school and learning all about the famous penguins from history, especially Tux, the penguin famous for creating Linux, although silly humans thought Tux was just a cute spokespenguin to help sell their product and he didn’t get any of the credit for actually creating the program. And of course she loved magic. She could spend hours and hours in the library reading about Houdini and David Copperfield. Of course Houdini was her favorite magician, seeing as her nickname was similar to his name (and probably the inspiration Pamela had in mind when giving her the nickname).

Penguini learned card tricks, how to pull a penguin chick out of a hat (after all, there really aren’t any bunny rabbits in Antarctica!), how to pull a bouquet of flowers out of thin air, and how to make food disappear quickly, although that last one may not have been magic so much as an empty stomach. But the one magical trick Penguini wanted to learn most of all was one she couldn’t seem to manage. Penguini longed to fly. Her parents always said that when she was just a little chick she would flap her wings as fast as she could as though she was trying with all her might to take off into the air. 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.

She had tried to tell her friends and her parents about her secret desire but they all just laughed at her. “Penguins? Fly? That’s the silliest thing I’ve ever heard,” said Paula, one of the more popular girls at school. “Just face it, Penguini, you’ll never be able to fly,” Percy, a teammate of Penguini’s on the swim team, told her. “We’re just not built that way so you should just get used to it.” But despite all the laughing and jokes at her expense, Penguini still held on to her dream. And she was determined to make it come true one day. She wasn’t sure how, but she felt it right down to her heavy, solid bones that one day she would take off into the air and find herself soaring through the sky.

Every night she would fly in her dreams. She would soar high up to the clouds, feel the wind whipping at her face and tickling her flippers, and she could feel that freedom. The world wouldn’t weigh her down anymore and she could leave all her worries and troubles behind and just be alone with the clouds and the sunshine and her thoughts. But every morning she would awake and be reminded that she was only flying in her dreams and her heart would sink a little bit. Her friends and family loved her, she knew that, but she also knew they just couldn’t understand her deepest desire. They were all content to waddle about on land, slide along the snow, and swim in the cold water. Her swim team told her that she should think of swimming as her form of flying. “After all, we do use our wings like the air birds do while we’re under water. Can’t you feel free doing that?” Percy asked her one day at swim practice. “It’s just not the same,” Penguini responded, and she dove into the water to swim her 500 meter freestyle.

Time went by and Penguini grew up but she never abandoned her dream of flying. And then came the day that changed her life. She was out for a long waddle along the shore which she did quite often as a way to get away from the crowd and have time along with her thoughts, when she decided to stop and rest for a while.

She began thinking about things – about her life, about her dreams, about the goals she had set for herself, and about what she really wanted to do with her life. She was deep in her thoughts, very serious thoughts for a young(ish) penguin (she was only 5…that’s about 25 in people years). She thought about all the criticism her friends and family have given to her about her dream, how they had laughed at it, and how she had stopped telling people about it because she didn’t want people to mock the dream that was so important to her. She always kept hope alive that one day she would realize her dream and be able to soar through the sky. And as she sat there deep in thought looking up at the clouds passing by something came over her. She came to the realization that she shouldn’t feel held down by her limitations as a penguin, a “flightless bird” as they’re are often referred to, but learn to let her heart and spirit carry her wherever she wanted to be.

On that sunny afternoon on the edge of the ice and snow, Penguini’s heart felt light and she felt as though a weight was lifted from her shoulders. She felt a sense of freedom come over her. And she knew that she needed to break free from her life for a while to go in search of her true happiness. She realized that the expectations that other people had for her had a big part in weighing her down, not gravity and her heavy, solid bones that she blamed for her inability to fly. Penguini was scared to go off on her own but she knew that if she didn’t she would always be living the life that everyone else wanted for her – to remain in the same village, become a responsible adult, make other people happy – instead of living the life that she didn’t even realize she wanted yet.

When she got home, Penguini began an internet search for a place to go and work on herself far away from everyone who knew her and had these expectations for her life. She found the perfect place – Penguin’s Rest, a Buddhist retreat center on Roosevelt Island out on the Ross Ice Shelf. It was set away from the rest of the penguin villages and provided a place for meditation, contemplation, and awakening which seemed to be exactly what Penguini needed. She worked hard to save up the money for a month-long stay at Penguin’s Rest and a few months later she packed her bags, said goodbye to her friends and family, and set off on the journey for Roosevelt Island.

Penguin’s Rest was the perfect place for Penguini. She got up early in the morning and spent time meditating in her room, then had a wonderfully cooked but simple vegetarian breakfast (who knew penguins liked things other than fish!) with the other visitors at the retreat center, and spent most of the rest of the day in meditation out on the ice flows, in the meditation studio on the top floor of the center, or in group workshops. She was amazed at how much she grew and the rising sense of freedom she found by exploring her own path to happiness without trying to make other people happy.

She learned how to sit in stillness and focus inwards while still looking outwards at the world. She meditated, prayed, practiced yoga, and learned more about herself than she even knew there was to learn! Her life changed. And when it came time to leave Penguin’s Rest and return home she knew what she wanted to do with her life. She didn’t want to stay in her village but she wanted to get out into the world, explore, meet other kinds of penguins, and see what lay beyond the horizon. The world was open wide to her and she felt like she could reinvent herself into whatever she wanted. And her dream of someday flying was still there but now she felt like it was all the more real in her everyday life. As she went about her day-to-day activities with intention, she felt her spirit soaring. As she journeyed far to the Galapagos Islands and the coast of Australia she felt her body become lighter and lighter. It was as though the weight of the world had been lifted from her and she felt freer than she ever had in her short lifetime.

And one day, without even realizing it, she began to float above the ground. Just a few inches; just enough so that she felt the wind tickling her flippers; just enough so that she felt weightless. Penguini looked down at the ground to discover her flippers had left the snow below her. She smiled from ear to ear and her heart swelled. It was as though she had created a special kind of magic by following her own dreams. She no longer had to go to sleep to dream of flying; she could feel it in her waking hours.

Over time she learned to float farther and farther off the ground – some may say she was just levitating, a trick that she had learned from one of her magic books, but she knew that this was different. She continued her traveling, learning so much from the other parts of the world and from the penguins and other animals she met. She showed them all how she could fly and told them of her dreams since she was a chick of someday taking off from the ground to be among the clouds. No one laughed at her anymore. No one scoffed at her dream because they could see that it was no longer just a dream. She had realized her dreams by finding the courage to go off in search of herself. And, in this discovery, she had found the freedom to no longer let gravity, and other people’s expectations for her life, hold her down.

Is it worth it?

It has been an extremely long time since I've posted anything on here. Mainly it's been because I just haven't had the time and energy to be doing much in the way of creative writing. It's there inside me wanting to come out, but when I'm spending all of my time and energy on work, and driving to teach my theater classes, and running around trying to gather costumes and props, and teaching swimming lessons now, and trying to fit in meals and sleep and medications and infusions it's pretty hard to sit down and let all these words and thoughts come out onto the computer screen (or even a piece of paper if I'm not near my computer). I will often start writing something on a piece of paper, often scrap paper that I happen to have with me at the time, but it never makes it to its conclusion. But tonight I'm feeling contemplative. And I have probably another half hour left of my evening doxycycline infusion which means I can't go to bed yet anyway so I'll just start writing and see where I end up.

Lately a lot of people have been telling me they're worried that I'm doing too much. And frankly I'm worried about the same thing even if I don't let on to it very often. This is my typical weekly schedule right now:

• Monday
  
• 8:00am-3:00pm Preschool
• 3:45pm-7:30pm Teach Swimming Lessons
• Tuesday
• 8:30am-1:00pm Preschool
• 4:00-6:00pm Advanced Theater Class
• 7:00-8:30pm Choir Rehearsal
• Wednesday
• 8:00am-3:00pm Preschool
• Thursday
• 8:30am-1:00pm Preschool
• 3:30-6:00pm Beginner and Intermediate Theater Classes
• Friday
• 8:00am-1:00pm Preschool (followed by about an hour of cleaning)
• sometimes an appointment around 2pm
• 4:30-6:00pm Teach Swimming Lessons
• Saturday
• Often a theater rehearsal from 2:00-4:00pm or 4:00-6:00pm
• Sunday
• 10:30am Church (sometimes choir rehearsal at 9:30am)
• 4:00-6:00pm Annie Rehearsal
  

So that's my "typical" week nowadays. It's a lot. Each week I feel like I'm putting out more energy than I'm generating and I'm slowly losing my reserve that I usually have to help push through what I need to do. I am flirting with the dangerous ledge that I seem to try to ignore until I'm right there on the edge looking down just before I slide off and crash hard. I hate crashing because it's so scary and it can get so out of control so quickly. In the past I have had many degrees of crashes ranging from mini-crashes to the mega crashes that are really scary and not only scare me but freak out most of the other people around me. Right now I'm probably on the verge of a medium-sized crash but so often a little crash can snowball into something much bigger. And before you know it you're tumbling down the mountainside and just hoping there will be something soft at the bottom to break your fall.

In a lot of ways it's scarier to be somewhat well (by which I mean relatively functional in the "real world" and straddling the "real" and "medical" worlds) 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. So freaking scary.

There's a song by Lori McKenna called Mr. Sunshine that says, "You scare me more than the hard times. I know they're comin' around again. You scare me more than the grey skies. Good morning Mr. Sunshine." It's true. When you're in that "grey sky" time you know to expect the grey skies. But when you're in the sunshine, it's almost like you're always waiting for the other shoe to drop. Or else you're living completely in the sunshine and when the grey skies move in you're taken totally off guard. Neither one is pleasant.

Anyway, I'm doing a lot is what I'm trying to say I guess. And I'm scared of that crash. I keep telling myself, "Just make it through this week. Next week is school vacation, you can rest then." But there's a voice inside me saying, "Just make it through the week? How am I supposed to do that?" I honestly don't know how much I have left in my reserve of energy. Somehow I manage to find that little bit of energy I need to get through what I have to get through, much to the surprise of me and everyone around me. But my body is giving me signs that I'm just doing too much. To an extent I can ignore some of the signs. I can deny that I'm completely and utterly exhausted except when I lie down and can't imagine moving a single muscle because of how much energy it will take. I can shrug off the increased headaches and just pretend they're worse because of the weather. I can ignore a lot of things, perhaps that's my stubborn nature coming out, but it's really hard to deny lab results that are there in black and white on paper. Lately they haven't been terrible but my liver is obviously starting to say it's had enough of something. I'm just keeping my fingers crossed that it won't turn into anything worse. When I draw my labs each week I will the numbers to go down (at least the liver numbers, wouldn't want my white or red cells to go down much).

Sometimes I honestly wonder if it's worth the sometimes seemingly impossible balancing act to be doing all that I'm doing. If I push myself to do too much because I'm feeling better but it ultimately pushes me into a crash that takes me a long time to pull myself out of, is it worth it? But if I just take it easy all the time and don't really enjoy the time that I am feeling better, is that worth it? It's a double-edged sword I guess.

Alright, that's enough pondering for tonight. I need to get myself to bed so I can hopefully get 8 hours of sleep tonight. Just three more days this week and then I'll officially be on vacation! And perhaps I can get things more in balance then.

Yours,
Penguini

And some other Lyme stories

On the theme of Lyme stories, here is a three part series from a news station in Virginia that was very well done. Take a look when you have a few minutes.

The Lyme Controversy - Part 1
The Lyme Controversy - Part 2
The Lyme Controversy - Part 3

Yours,
Penguini

Lyme Disease Video

This is a YouTube video that someone (I'm not sure who) put together about the realities of Lyme disease. Take a few minutes to watch it as it's quite well done.

Yours,
Penguini

What is "normal"?

Normal. Normalcy. Normality. However you want to say it, there is a certain connotation behind it. But what is normal? Is there one person somewhere who is considered perfectly “normal” and the rest of us are just measured against them? Or is it about taking the middle slice through a population and coming up with the average and considering that “normal”. Like when it comes to a “normal” body temperature. How many people really have a temperature of 98.6° all the time? I know there is naturally variation among people, but someone draws the “normal” line somewhere and says that is what we should all strive for. Personally, when my temperature gets to the “normal” 98.6°, it’s time for me to keep an eye on it and worry if it climbs higher since my “normal” temperature is about a degree below that.

And when it comes to other “normal” things…well, who determines what is considered normal and what is considered abnormal? When it comes down to it, it’s all relative. What is “normal” for me would probably be seen as strange, weird, bizarre, or somehow abnormal in your eyes. For me, normalcy involves being in the medical world and having that on my mind pretty much 24/7 because pills have to be swallowed at certain times of the day, IV infusions have to be scheduled and hooked up on time, shipments of supplies need to be timed so I don’t run out of supplies, refills on medications have to be called in and picked up on time, doctor’s appointments have to be scheduled and gotten to, and so many other medical things that I have to be aware of. And that doesn’t even go into the constant reminders with the symptoms that are there all the time – the fatigue, the joint and muscle pain, the gastrointestinal pain and nausea, the brain fog, and everything else that goes along with these chronic illnesses that I carry around with me all the time.

I am sure that for most of you, “normal” doesn’t include carrying around a backpack with portable pumps in them and have tubing coming out from under your shirt and be out and about in the world (or not) while infusing various medications and hydration. And because this isn’t your “normal”, you may be confused and taken aback when you see me (or someone else like me) walking around in the grocery store with this backpack set-up. When I go out with my little backpack, of which I have a very large collection (I just took a count and I have 12 in all but I don’t use all of them, I have a few that are my favorites and the rest are around for other occasions and just to have options), I feel like I get weird looks from people who just don’t know what it’s all for. I’m somewhat self-conscious about it all, but I’ve learned to be grateful for the fact that I can be out at the grocery store while infusing because without the backpack, pumps, and medications I don’t think I’d be able to be doing any of that. I would be stuck at home hooked up to an IV pole or, worse yet, in bed without the precious medications that have kept me alive for the past 10 years (well, not 10 years of IVs, it’s only been just over 5 years since the beginning of my first round of IVs). Instead of being totally embarrassed by the loud sounds my pumps make and having people ask about the sound, I am so grateful to have the pumps in the first place because I know how much more difficult my life would be without them.

My idea of what is “normal” is so different from what the…well, “normal” view of “normal” probably is. But is there really a normal view of normal or is that an oxymoron? If there really isn’t just one “normal”, then wouldn’t we each have our own unique idea of what “normal” is? For you, normal may be caring for an ill child, an aging parent or grandparent, having a house full of pets, having to work 2 or 3 jobs to make ends meet, raising children on your own, or learning to deal with a difficult prognosis of this or that disease. So who has a right to say that something is normal or abnormal?

Granted, a view of what is normal has a place like in lab work. It’s helpful in that instance to have parameters of normal defined so that you know if things aren’t right for one reason or another and you can try to fix them. But even there, what’s normal for one person isn’t necessarily normal for another person. For example, my alkaline phosphatase (a liver function) is chronically low and we’re not sure why but perhaps that’s what my “normal” is right now and maybe it doesn’t really matter that it’s low, maybe it does. We don’t know everything there is to know about the human body. And with things like blood pressure and cholesterol constantly having their “normal” numbers lowered and lowered, how can someone possibly seek to be within the parameters of “normal” that are being redefined on a regular basis? I know that my blood pressure is good when it’s 120/80 but that is now considered prehypertension whereas it used to be the normal value that everyone should strive for. When my blood pressure goes down to, say 100/65, that’s not good for me and usually it means I’m not feeling great. But the problem is, many doctors (and nurses and just regular people) don’t take the time to realize that one person’s “normal” is probably different than another person’s “normal”. So if I went to a new doctor’s office and they took my temperature and it was 99.0°, they probably wouldn’t think much of it but I would know that it’s bordering on a real fever.

I think I’ve strayed from what I was trying to focus on. It’s not about those medical values of blood tests, temperature, blood pressure, etc. It’s about what we consider “normal” in our day to day lives and how they are so different from one person to the next. It’s hard to get weird looks while at a store with my little backpack and tubing coming out from underneath my shirt. It’s hard to get funny looks when I have to park in a handicapped space because I don’t look handicapped. But the truth of the matter is that no one knows what is going on within anyone else. There’s a great quote by Miller Williams that says, "Have compassion for everyone you meet, even if they don't want it. What appears bad manners, an ill temper or cynicism is always a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone." And along with that, who are we to say that our lives are more “normal” than someone else’s? Normalcy is all relative and looking down on someone else for their apparent abnormality and seeing that as a problem just hurts ourselves because we are developing assumptions that shut us off to the world.

Seeing the world narrowly in any way cuts us off to experiences that could be valuable and possibly life changing. Just because something is different, doesn’t mean it has to be scary.

Yours,
Penguini

The Great American Adventure with a Twist...of Lyme

I'm preparing myself to do something big but I don't think I know just how big it's going to end up being. I'm planning a road trip which in and of itself is kind of a big thing, but it takes on a whole new meaning when put in the context of my life. I'm viewing this journey across the country as my way of jumping into life, seeing as much of the country as I can, soaking in everything, and breaking free of the shackles that chronic illness has imposed on me for such a long time. It will be my journey towards taking flight into my life. Not really a life "after" Lyme but a life of living in balance with it, not letting it determine my every move but in no way able to simply put it behind me because it is still so present in my everyday life.

And I think it is fitting that I will be beginning the planning of this trip as I approach the decade anniversary of my diagnosis with Lyme disease. On December 28, 1997 (I'm 99% sure that's the specific date) I was officially diagnosed with Lyme disease. I was 15-years-old, a homeschooled sophomore in high school, and I had spent the preceding 3 months leading up to my diagnosis mostly bedridden with debilitating fatigue and a never-ending migraine as well as various other symptoms. And I had spent years prior to that with random symptoms that didn't seem to be associated with anything, that just simply seemed to pop up here and there and disappear as mysteriously as they appeared. And I have spent the almost ten years since then on the roller coaster ride that is chronic illness. I don’t know how many days I've spent traveling to doctor's appointments, how many hours I've spent hooked up to IVs, how many tests I've had done, how many vials of blood I've had taken, how many doctors I've seen in total, and how many various diagnosis (both correct and incorrect) I've been given. But none of those specifics really matter.

What matters is that I am here, still here and living my life in ways that I didn't really think was possible even just a year ago. There were times in the past ten years where it seemed I would be stuck in that dark hell forever, that I would never find the right doctor, get the right medications, get those right medications covered by insurance so I could actually get them, and slowly begin to climb out of that hell. And many times when it seemed I was finally finding my way upwards towards improvement only to slip or stumble and slide back down. It really is a slippery slope and there are no guarantees that recovery will last and really no telling when a downward slide will happen or what might bring it on. Now I have climbed out enough so that I can kind of straddle the medical world and the "real" world – that illusive world where people get up in the morning and go to work; where people are able to pay for their own apartment rent, food, gas, and other necessities with minimal help from others; that world where doctor's appointments are scheduled around life rather than the other way around. But I never forget what a slippery slope it is and find myself terrified of the thought of a downward slide but at the same time afraid to get too used to this more "normal" life because it feels like it can't last forever.

I still have these daily reminders of being sick. I'm hooked up to IVs many hours of the day, I swallow dozens of pills a day, I have doctor's appointments at least every other week and visit my PCP's office weekly for various treatments, and I always have this voice in my head that reminds me to take it easy and figure out ways to conserve energy and do the best I can for myself. But I am here. That must be a testament to something. Because there were times when I really didn't know what would happen and just making it through a day was an accomplishment. Well, now just making it through a day is an accomplishment but not just because I continue breathing in and out and can eat enough to stay alive but because I survive 21 active 4-year-olds, teach theater classes, stay active in my church through choir and classes, am literally days from officially graduating from college (a long 7+ year process), and I am managing it all the best I can.

So, back to what this was supposed to be about, this road trip I am planning. It started out as simply a trip to go see the country a little more and make it out to visit my sister and brother-in-law during my month off of work in June. I was making a mental list of the places I wanted to stop and see – make a stop in Tennessee to visit friends, see Sedona in Arizona, see the other big sights of the southwest - the Grand Canyon, the Hoover Dam (which has some meaning going back to high school geometry that perhaps only my family knows about but has a different meaning now – maybe I'll write about that sometime soon) – and a stop at the Johnny Appleseed Restaurant in Virginia (kind of a family tradition). But now the trip is becoming more than just a trip, more than just packing up a car and going to see the country. This is becoming a statement about where my life is going, that I am going...somewhere. I suppose it's truly "A Journey to Somewhere" (if that makes no sense to you, look up at the top of the page). And it has the potential to turn into something else, something that could potentially benefit the Lyme community (or at least specific organizations).

My aunt and uncle have helped me think bigger in terms of this trip. Not just think of it as a typical American road trip but think of it as a real accomplishment and adventure. Something I can put a lot of spirit and soul into and really dream big as to what I want it to become. I'm still trying to think up a name for the trip. (Lyme on the Road? Lyme Across the Country? Lyme on Wheels? Lyme Hits the Road? Lots of ideas there.) But the name doesn't matter right now, and even if I don't have a name that's fine. The idea my uncle had was to try to turn this into a fundraising opportunity for a Lyme organization – get sponsors, get donations, have people be able to track my progress and experience my adventures in some way. And the more I think about this the more I love the idea, the more I want this to become a big thing and to have it be about more than just me seeing the country. There are so many other Lyme patients who are not able to do this kind of trip for one reason or another – physical constraints, financial constraints, etc. – and I would love for my trip to be a way for them (and maybe this applies to you) to see the country, to experience it with me.

So there it is, a big adventure in the works and something that could be...transformational. It's so open to possibilities and I can’t wait to get started planning it!



Yours,
Penguini