A Note for my Caretakers

caretakers

Dear Caretakers,

I imagine that this will be the first of many letters and many conversations between us. I’m starting here in a seemingly distant and formal way  because I’m not strong enough for the more intimate teary-eyed conversations right now. I’m also unsure of who needs to read this letter, and I want to give each and every one of you an opportunity to know that you are seen. As I ascend to wellness and the fog is slowly clearing, the vast impact my Lyme disease has had is coming into focus. I look around and I see many faces who have fought with me, and I have no idea what your experience has been, how hard it might have been for various reasons— I never asked. I’ve counted 20 of you who were very close to me over the last three years— 20 of you who I consider to be my main caretakers. 20 of you who were present for much of the suffering, many of the needles, too much of the heartbreak and all of the unthinkable need I was experiencing. But that leaves out maybe 200 people— or more— who donated, prayed, tracked my progress on Facebook, or worried about me. This letter is for all of you, whoever needs it: those of you who fought with me on an almost daily basis on the front lines, those of you who stayed back in the trenches gathering much needed supplies, and  those of you who prayed from your bedroom.  You were not my cheerleaders— you were my ARMY. I write every week about my story—my personal struggle with Lyme disease, stored trauma, and chronic illness. Yes, I often touch on how grateful I feel to have had the most compassionate army of people surrounding me, protecting me from all angles, but it’s come to my attention recently that you have been at war, too. This isn’t just my story—you’ve had your own journey watching someone you love suffer and fight for wellness. And no matter what part you played in this particular journey, your feelings— whether past, present, or future— are valid.

I can empathize—I’ve watched all members of my immediate family,  suffer for most of my life, and I’ve remained unable to do much of anything to help. While I have seen physical illness take hold of people, my family mainly suffers from addiction and mental illness—heartbreaking diseases that impact all surrounding loved ones. Addiction is called a “family disease” for a reason—the powerful current ripples out larger and larger often affecting generations of people whether they’re drinking OR NOT.  People suffering from diseases like these tend to be under the delusion that no one else is affected, that no one else could possibly be in the kind of pain they are in. But I can assure you, there’s PLENTY of suffering to go around. And it’s that type of thinking, that you’re not allowed to have feelings because you couldn’t possibly be suffering more, that prolongs the effects and keeps the current going strong. For a long time, I didn’t let myself really experience the hurt and abandonment I felt because I just assumed that my father suffered more than I did. He talked often and loudly about his own fucked up childhood and made it clear that my own was a cake walk compared to his. I have no idea if that’s true. But I watch people tormented by that voice all of the time—it says, “oh, but my father had it so much worse than me. He was abusive BECAUSE he was abused so I should just be grateful for what I got.” Or, “My mother was the one who suffered in her illness, I can’t possibly make that about me.” It seems like a very compassionate and empathetic voice but really its DNA is that of martyrdom and martyrdom is the tidal wave on the horizon preparing to wipe you out. IF that voice is active around my Lyme disease, if you are one of the 20— or one of the few hundred— and you have suffered through my illness let me just say your pain is valid, your fear is valid and whatever you experienced or begin experiencing is 100 percent valid. I’m not delusional—I’m not saying that Facebook friend #427 is wildly affected by my Lyme disease and needs to seek counseling. I’m just saying that whoever you are and however you’ve been affected—I hope that you have given/ are giving yourself an opportunity to feel it.

I can’t imagine  what it must have been like to be with me every single day through such horror, so many breakdowns, and so much illness. I have no idea what it was like for you to listen to me talk about my own impending death on repeat. Or what it was like for you to watch me go from excited about the full life I had in front of me to bed ridden and in tears every single day. I don’t know how it felt to lose your fun, reliable and available friend. I don’t know what it’s like to care for someone at such a young age, to not know if they’re going to get well and to be terrified to lose them. I don’t know what it was like to stick me with needles while I yelled out in pain, or  what it was like to leave my house when I so obviously didn’t want you to leave. Or how painful it might have been to hear me talk about how suicidal I was or how much I hated myself for being sick or how much I just “couldn’t do another single day in my body.” I imagine that, at moments, I may have felt safer in my own body than you felt watching me—I always held some sense of knowing that I was going to be ok (one day), and you might not have had that. Maybe you were scared to leave me alone, maybe you were scared to hang up the phone with me after I expressed so much pain. Maybe you’re scared that I’m going to abandon our friendship or relationship now that I don’t “need” you anymore. Maybe you’re scared that I’ll forget about you. Maybe this experience kicked up some old experience you’ve had with illness and death in the past or maybe it’s scared you…maybe now you know too much about the in’s and out’s of illness, fucked up doctors and how the medical system doesn’t EXACTLY have our back. And maybe you’re fucking mad at me. I don’t know. I know that I’m incredibly grateful for every single moment that you loaned your hearts to me, and I know that your love has altered me forever.

You people have inspired me every single day to be a better human. You have taught me through your own kind hearts and incredible efforts how to show up for the people I love. I am grateful for each and every thing you did for me. For you who held me day in and day out, always believed in me, and made me feel beautiful when my lips were purple and I was under 100 pounds. You who flew around the world with me to care for me while I got Ozone therapy. You who put me up in Florida and wheeled me around Disneyworld so I could have a day of magic in the midst of shit. You who sent me care packages, called, and texted endlessly. You who made me fundraisers and rubbed my body when it hurt. You who changed me into pajamas, who helped me get up stairs and hills, who brightened up my day with smoothies, food, and laughter. YOU are my fucking heroes.

I sincerely hope that you’ve gathered your own support through whatever journey you’re on—your own army—and that, if you haven’t, you begin to get help now if you need it. This is not just a message about my Lyme disease. It’s also a message to say that no one gets left out of life’s obstacles. Pain is pain—it’s relative and credible no matter what. And while I’m not particularly ready to counsel with you on how the past three years have potentially hurt you, I do want you to know that you are in my thoughts. I hope you know that I think of each of you everyday. That I know I couldn’t have gotten well without your endless support and love. I hope you know that I’m not going anywhere, and that now we get to do all of the fun things we’ve been planning for the last three years. I hope you know that every single hug, every text message, every phone call, and every time you held me while I sobbed, screamed and cried took me one step closer to health. And please know that as I heal, I imagine all of us healing together.

With Fun and Love,

Jackie

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Healthy Enough to Feel Like a Lunatic

THE PART OF GETTING WELL YOU CAN’T BE PREPARED FOR:

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I am red and dizzy, hot and overtired sitting at LAX waiting to board a flight to NYC. It’s my first time solo in an airport without wheelchair assistance in almost 2 years. It’s a flight that I’ve diligently avoided for over 2 years- unable to imagine being in New York, my home town that holds too many emotional memories; the city that never sleeps. Why would I EVER travel to the city that never sleeps when all I could do (whether I wanted to or not) was rest. I’m terrified to go to New York City. I’m terrified of the emotional and physical stress. Seeing my family has gotten harder and harder for me over the years as the less than pleasant experiences pile on, and I’m saying goodbye to my boyfriend of 2+ years (AKA my main care-taker) so he can go off on a six month-long journey of his own, and I’m doing it all on a crazy budget of zero dollars because I’m broke. Once upon a time, ESPECIALLY while living in NYC, I was capable of housing a tremendous amount of emotional and physical stress. When I got sick, well, I got TOO SICK and had no space for emotional stress. Hence, I didn’t go to NY, I didn’t allow anything “anxiety based” to infiltrate. My sole focus was, and had to be about, self-care – taking baths, eating food, and drinking water. Life  “simplified” under the  most complicated circumstances. I was just like “gimme my blanky, rub my back, I just gotta keep living.”  Now, I have this little bit extra, this bit of energy totally available for usage, and the emotional stress (of things that have little do with illness) start making up for lost time. It’s like I haven’t seen or talked to my best friend in two years so we have LOTS of catching up to do: finances, romance, family, career, friends, and exercise – there’s so much to talk (think) about! Isn’t it lucky that I’m well enough to think about things other than “where’s my fucking blanky. I need use it to block the sunlight! OK now- put Aladdin on so I can calm down!”  Well, yeah, it’s lucky and great AND somehow so much harder than I thought it would be. First of all, I’m  getting better- I’m not just SUDDENLY  better and back in my old life, flying trapeze with no trauma from the last 2+ years of needles and pills and reckless doctors. It is so much harder than I thought it would be. There’s going to be stress because I’m not enlightened enough to be stress free, but HOW do I balance as I step back into this world as a functional-enough-to-visit-home individual? How do I balance as an individual that’s just functional-enough to consider writing on all of these topics for my piece this week:

 Thursday: It seems like anxiety is coming up a lot with one of our wellness-companion clients, I should talk about my own struggles with anxiety. I’ll start off with my first panic attack when I was ten, then talk about my panic attacks in my early twenties and then about how it all changed with illness.

Then I remembered that this trip to NYC was looming. I’ll write about my relationship with NYC and how much it has changed over the years. I’ll talk about my deepest, darkest secret: that I was not only born on Staten Island, but I was raised there, too. I’ll talk about how terrifying it is to see my family and why. I’ll talk about having a new experience there because illness has changed me.

Friday: I had to go to the Department of Social Services for Food Stamps I should talk about all of my experience with needing government assistance. God, I feel like a piece of bacon in this joint- everyone is looking at me because I don’t fit in: I’m young, white, pretty, my shoes are in one piece, and I’m  not strung out. I don’t even smoke. I’ll write about how this was never supposed to be my life, my father promised me the world: my own apartment in Manhattan, any college I wanted, and support in whatever career I chose. Then he started smoking crack and the next thing I knew we were on state insurance and I had no access to doctors. Yeah, that’s what I should talk about.

And, I started writing that, but then I remembered that Ian, my partner, is leaving on a six month long journey this week.  Maybe it would be cathartic to talk about saying good-bye to Ian and all of the fear I have about him leaving. I can disclose how much I love him, and how much he’s cared for me, and how deep my abandonment issues run (well, the world knew about my abandonment issues like forever ago.) Yeah, I’ll talk about Ian and romance while chronically ill.

Then I found myself laid out in bed one afternoon very sick. I’ve been functionally sick this week, not like last year – when the stairs looked like Mt. Everest. I’ve been exhausted and in pain.  It’s not surprising that I feel like garbage: my boyfriend is leaving, I’m traveling to a place I do not want to be, I have SUCH LIMITED funds that I spent hours in a cesspool of germs just to beg or food stamps, not to mention that I AM NOT “ALL BETTER,” I’m just healthy enough to fly alone, walk, hang out with people, talk, laugh, sit in a government-run agency for 3 hours, pack,  hold space for saying “BYE I LOVE YOU,” to my boyfriend, AND actually feel all of it.  I can’t just hide from, or bandage up my truth with gratitude lists, meditations and, I don’t know, cucumbers. I’m an unenlightened and totally emotional human. So what in the fuckity fuck do I do?

I found something really interesting recently. In the text-book of Alcoholics Anonymous, it says: “Assuming we are spiritually fit, we can do all sorts of things alcoholics are not supposed to do. People have said we must not go where liquor is served; we must not have it in our homes, we must shun friends who drink; we must avoid moving pictures which show drinking scenes; we must not go into bars; our friends must hide their bottles if we go to their houses; we mustn’t think or be reminded about alcohol at all. Our experience shows that this is not necessarily so. We meet these conditions everyday…. his only chance for survival would be someplace like the Greenland Ice Cap, and even there an Eskimo might turn up with a bottle of scotch and ruin everything!…In our belief any scheme of combating alcoholism which proposes to shield the sick man from temptation is doomed to failure. If the alcoholic tries to shield himself, he may succeed for a time, but he usually winds up with a bigger explosion than ever….So our rule is not to avoid a place where there is drinking, if we have a legitimate reason for being there…Therefore, ask yourself on each occasion, ‘have I any good social, business, or personal reason for going to this place? Or am I expecting to steal a little vicarious pleasure from the atmosphere of such places?’ If you answer these questions satisfactorily, you need have no apprehension. …But be sure you are on spiritual ground before you start and that your motive in going is thoroughly good.”

For me, I can change the words from alcoholism to “chronic illness” and liquor to “emotional stress.”  Stress cannot be avoided unless I go live with the Dalai Lama and, even then, a yak might go wild and try to chase me in which case, my body will LIKELY respond with stress because I don’t like being chased. So how do I keep balanced so that when I face the scary stuff, my body doesn’t completely FALL APART? It’s an ongoing struggle. The main thing for me is to feel the feelings in my body without attaching a story to them. Or to stay in the facts. Like “I’m sad Ian is leaving,” instead of “what if Ian leaves me, meets someone else, gets hurt, gets in trouble, or decides he doesn’t want to come back to LA for some reason.” That’s what I like to call “story time,” and as many of you know, story time can be dangerously entertaining and enticing. Noticing the thoughts in my head that are 100% fear-driven and not based in reality is step one. Pausing, taking a deep breath, getting present, and stating what IS true is step two. That’s an honest place I can make progress from. Knowing that I’m sad Ian is leaving, I’m nervous about my trip, and am concerned about finances, and have a treatment coming up, what can I do to stay balanced? Here’s some of what I did and some of my game plan:

I called/ texted a few of my closest friends something like :”I’m really scared…here are all of the things that are happening, and I might need a little extra support over the next few weeks.” This simple practice gives me the feeling of support- people know what’s going on in my life and they have my back.

I called Eva before I got on this flight because I needed to talk about the specific illness/stress combo and how to combat it.

I made sure to pack some of the healthy food I need in case I can’t get to the “right kind of store” right away. Jesus, being unwell is SUCH A PAIN IN THE ASS.

I humbly got food stamps before I left so I could buy the healthy food I need. I took some yummy snacks to the office and a book that made me happy. I know how to prepare myself for the scary things that feel bad today.

I made sure to buy enough water for the plane ride.

I called my grandmother, told her I’d be coming, and that I might not have much energy. I told my Mother and Uncle the same thing. I do not plan on over exerting myself.

I take it ONE MOMENT at a time. Just do the next right thing- the advice my dad gave me a decade ago that never fails.

I chose not to see my Dad because I don’t spend time with people who ONLY bring me stress and heartache. That’s like an alcoholic going to a bar with no one and for no good reason. So, the only people I will see on this trip are the feel-good people.

I will take time each day for myself- resting, reading, writing, listening to guided mediation, going on light walks, and things of that nature.

I will lower my insane expectations of myself and allow myself to show up as best as I can, and no better than that. That means that I don’t try clean my Grandmother’s roof or like save my brother from his lifelong pain but instead focus on breathing and watching a funny movie with both of them.

I will allow others to care for me, and I will be kind to myself. I made sure to pack comfortable clothing- because seriously- now is not the time to worry about looking good.

The list goes on, really. There are endless ways for me to take care of myself and none of them will necessarily “cure” the pain, the stress, and the anxiety. It WILL be sad to say goodbye to Ian and it WILL be hard to spend time with my family AND my financial reality remains a stressful one. (Sidenote: I just spilled an entire cup of gingerale on myself in hour one of this plane ride. So my ass is now soaked and sticky. That’s not fun and also maybe I’m less functional than I thought). That’s OK. I don’t have to resist it or attach myself to the other story I have which is that “stress WILL TAKE ME OUT.” That story is scarier than the stress itself: the story that emotional pain will physically hold me down and likely never let me up again, therefore making me all the more nervous when my anxiety begins: ARE WE the smartest mammal? Illness has made me afraid of emotions in a way because, for a long time, I truly did not have the capacity to deal with anything other than just stay alive. Now, I’m here, on this plane with soaking wet pants lucky that I have space for more and learning how to balance it. In the end, yeah, I feel lucky to be alive and I feel lucky that I GET to feel it all.

With fun, love, and sticky pants,

Jackie

 

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