The Moss-Covered Tree

April 2012:

It’s the third time I’ve thought about dying today. When my car passes a big, solid, moss-covered tree, I wonder with cool detachment what it would feel like to veer off of the road and slam my car as hard as I can into it. Will my kids be okay without me? Will my husband? Will my family forgive me or will they spend decades missing me, hating me, sitting across from therapists who try to walk them through the moment their wife and mother made an irrevocable choice. I’ve had these thoughts for a year, now, and I know they aren’t normal or healthy, but I don’t want to see a psychologist because I don’t want to add another doctor to my list.

It’s late in the day—a sunny Friday afternoon in April and I’m exhausted. Not just tired, but bone-achingly weary. I can feel every cell in my body begging me to lie down in whatever dark corner I can find but I know I can’t give in. Too many people depend on me to function–to smile through the daily weight of pain. Even though each rise and fall of my chest takes an effort I’m afraid I no longer have, I need to drive a change of clothes to the house where my 10 year-old son is having a sleepover with his best friend.

I have every intention of picking through our mountain of dirty laundry to wash a load of clothes but I can barely lift my arms. I want my son to have a clean pair of jeans to warm his skinny legs the next day, but I end up shoving crumpled khaki shorts and an old Star Wars t-shirt into his backpack instead. I pray the new warm weather will hold out so my son’s legs won’t freeze when he’s wrestling around with his friend in his backyard. No matter how many times I tell myself that he will be okay, I feel the weight of my mistake like an anvil on my chest. I am ashamed of what fills the backpack—how the absence of long pants and long sleeves proves that I’m a bad mother.

It’s 2:45 in the afternoon and my hair is wet from a late shower, piled high on top of my head in a sloppy bun. I’m wearing light but full make-up, and the speckled, slightly dark clumps of giraffe-like age spots that dot the edges of my forehead and left cheekbone are covered. I’m 36 and stay out of the sun, but my skin is changing from the strong medications I take and I look at a new face in the mirror now. Every time I step outside of the house, or when my husband’s eyes wander to the donut-shaped hernia that dots my bloated mid-section, I feel less than human and I wonder how I’ve fallen so hard in five years.

I don’t remember what it’s like to feel normal.  Who was I before the surgeries and IVs?  Before Crohn’s disease came to define me?

Just 30 minutes before, I’d sat huddled in the bathroom corner, my phone shaking in my hands as I dialed my husband’s number. I’d been on the computer since seven o’clock that morning, working at home, packing lunches for my daughter and son and getting both off to school on time while fighting the urge to throw up in between bouts of painful diarrhea due to my “moderate-to-severe” Crohn’s disease. “Moderate-to-severe” was my gastroenterologist’s term and not mine. If you asked me to quantify the severity of my disease, I would drop the “moderate” in favor of “life-altering”. Or, in moments when I considered slamming my car into the solid wall of a tree, or driving off of a highway overpass into the chasm of the clover-filled ditch below, “life-ending”.

I hung up on my husband before the call even started—before his phone could ring. How many times has he been forced to listen to my complaints? How many times have I burdened him with my fears and described every scary ache and pain that he couldn’t fix? That he couldn’t feel? I knew it wasn’t fair to tell him about my new symptoms–the  inexplicable itchiness and burning that was now setting my pale skin on fire, flaming through my body from the bones out, the skin on my forearms a mottled tomato-red.

I knew the burning had to do with Humira, adding to the drug-induced raw patches of skin that bled if I touched them and stung like infected, open wounds. I had a small patch of skin on the right side of my nose that was always dry and flaky and sometimes oozed a clear fluid, but I covered it carefully so it wasn’t noticeable to anyone but me.  I clutched the silent phone and forced myself to stand up on shaky knees and I looked in the mirror and saw that my chest was cherry red and my face sickly yellow. I was so weak that I wanted to crawl into my bed and collapse face-down, but I had to get the backpack to my son, come home, work for three more hours, and help my daughter with homework when she stepped off of the bus.

I remember the day before and realize I crossed a line when I told my children that if anything ever happened to me, they should know that I was looking over them and would always be with them. That I was proud of them and loved them and to never forget that they were my greatest accomplishments. When my son’s eyes grew too big, I was quick to explain that nothing was going to happen, that I just wanted to tell them how much I loved them. But I know deep down inside that I can’t guarantee that I will be with them when they need me the most and my soul aches from that knowledge. It’s a constant presence, this future failure.

Like all IBD patients, I can’t count the times I’ve had doctors tell me how dangerous it is to have a suppressed immune system as they write the prescriptions to suppress my immune system. I can’t count the times I’ve listened to warnings from the makers of Remicade and Humira about deadly fungal infections, tuberculosis, and vague ‘lymphomas’ that walk behind me like tall, dark shadows. I’ve been told that any time someone with Crohn’s disease enters a hospital, they’re playing Russian roulette with steroids, sepsis, and C. diff.; and I’ve also been told that Crohn’s patients who are on narcotics to control their pain have a higher chance of “meeting a bad end”. But I don’t tell my children this because they’ve visited me too many times when I’ve been hospitalized. And they’ve watched me give myself shots every week and take pills every day. Instead, I tell them that I will be fine and that they will be fine and that everything is okay.

But my heavy arms barely work and the sunglasses are covering the hot sting of tired tears. I pass the tree trunk that makes me think of empty oblivion and I blast one of my favorite songs from the car stereo until I feel it echo and pulse inside of my sore skin. I hope it will make me want to sing until my throat aches—but it fine-tunes every negative feeling I have and amplifies it so I turn the volume down. I keep my mind carefully blank as I pull into the driveway of the squat, ranch brick house my son is spending the night in and I see the top of his blond head and I’m momentarily restored. I know that this is all that matters and he smiles at me, but looks weary, like I might snatch him back and ruin his sleepover, or worse, yet, kiss him in front of his best friend. Instead I give him his back-pack and tell him to wear his brown hoodie if he’s too cold in his I’m-a-bad-mom shorts.  He nods and runs back inside while I talk to his best friend’s mother for a moment and I smile and tell her that her new house is gorgeous.

After I leave I’m filled with such a sense of accomplishment that it fills my chest until I stop at a red light, idly look down at my forearms and notice a field of small, hard bumps on the underside of each. They are flesh-colored, with a hint of yellow wax underneath and my heart skips a beat before starting again with a sickeningly slow thump.  I know what the bumps are because I’ve seen them before—they’re eruptive xanthomas—and they appear when a person has very high—ungodly high—cholesterol.

I take a breath but it hits me anyway. I know that right at that moment, sitting in my car, trying to go about a normal day taking care of my children, my home, my husband, and my job, liquid fat is accumulating at such a high rate in my blood stream that it’s being forced to deposit under my skin. I know the new meds aren’t working, and that I’m at an extremely high risk for pancreatitis. I wonder what this collection of lipids is doing to my arteries and heart and I know I’m powerless to stop it.  It’s just one more thing that makes me “other” than everyone else—overwhelmed, sick and alone.

At that moment, the sun is dulled and everything feels hopeless and fake. My body is falling apart and I’m convinced that my doctors will never figure out the combination of medicines needed to put it back together. I can’t smile. I can’t hope. As I drive back home, I take another look at the moss-covered tree.

Photo by Danielle Moore

Photo by Danielle Moore

23 thoughts on “The Moss-Covered Tree

  1. I suffer from depression too but I don’t believe in suicide so some days I just kind of muddle through them knowing that feelings are subjective and do not control my life I get to do that. These are some things that help wellbutrin is excellent for depression and it also treats ADHD, folic acid for me works wonders. and paying attention to what I eat. Anyone that is brave enough to even contemplate veering off the road is brave enough to take it one day at a time with Crohn’s. If you take any type of narcotic for your flare ups remember the effect they have on your body and add this to your gonna kick depression’s butt toolbox. Sounds like you need to start delegating too so you can get the rest you need. Know you will be feeling better soon. Whoo! Whoo! My prayer for you this week is that you will find comedy in unexpected places.

  2. I’m so sad to hear how difficult your life is right now, but I agree with Kimberly – Wow! This is an amazing essay. This blog, these essays, this is your book, or it certainly could be. This is a powerful and courageous piece of writing. Go back to your “Positive Pledge” and reboot if you can. You are such a talent, in spite of the misery you’re having to endure. I feel privileged to read your personal and honest accounts of daily life. You are extraordinary.

    • Thanks, Robyn! I appreciate the compliment and I think *you’re* extraordinary! Seriously.

      I wrote this in April and just chopped it down. I’m in a better place but wanted to share this thought process with others to let them know they’re not alone.

  3. Wow. You have a very vivid way of expressing yourself so that the reader can experience (or take a glimpse of your experience) and it gives a clear understanding of what your days are like.
    I want to answer your very 1st question in your post. The answer is no, your kids need you because you are a GOOD mom. The fact that you are conscious of things that you feel you should do (even if you don’t get them done) is what makes you a good parent and wife.
    People like us, with this Crohn’s disease, don’t understand the severity of how it this disease effects our lives on a daily basis.. Why? It’s invincible. I’m very misunderstood by my entire family besides my sister who is a doctor and fro her education she knows what symptoms I experience. She’s never experienced the gut wrenching pain, bouts of diarrhea (up to 20-25X day when it was really bad… luckily i’m down to less than 8X, which gives me the freedom to leave the house), the fevers, the achy joints, fatigue, the need for some oxygen to my freakin brain because of anemia, and the list goes on. The people in our lives only have a certain depth of understanding because they don’t live in our skin. Frustrating? Extremely..

    Do this… put your hand over your heart. Reallly do it, put your hand over your heart. Feel it? It’s beating for a reason and your life has purpose even although you feel like giving up sometimes. Things will get better. I think that for you, you need to make some changes with your medication regime… just based on what you have mentioned throughout your post(s), I think the meds have a big effect on your quality of life and your thoughts and mental health are also suffering. You need some peace in your life and the stress you have isn’t going to help you get any better.

    If you want, contact me and I’ll give you some suggestions and share with you what I did.
    You mentioned something about pain meds…Well yes you are absolutely right, they F up your insides and I ate vicodin, among other things to function in order to live “normally”. I did this for over a year or so. When I stopped taking them, was when the wrath of the disease took full effect. this was in 2007 and it has taken up until now to get better (& i’m still working on getting into full remission) with out the use of harsh meds. Maybe it has taken me a longer than usual amount of time to get well, but it’s better than living in fear everyday. To tell you the truth the short period of time I was on Remicade, it didn’t do much. Not with all the risks I was chancing and plus I went against my gut feeling /intuition and luckily through natural happenings in life, I got off the toxic stuff. My genetic make up makes meds like Humira ect. not appropriate for me. T cell Lymphoma runs in my immediate family (which is the cancer that we risk getting when taking humira, remicade ect.) and also my mom passed away from Melanoma at a young age. I just cant take them, I WILL get cancer if I do. My intuition doesn’t lie.
    I had no choice to research this disease inside and out because I needed to treat this damn disease and no doctors were able to give me any other medication options. I exhausted them all and surgery just wasn’t an option (that’s just my standard that I have for myself.) I knew that just because all the doctors were telling me I had depleted all my options (that THEY knew of)…..I had a huge hope and certainty that there were other options for me out there. MANY options, but I would have to fid them myself. I knew that if I searched hard, I would find them.
    Well, I’ll end this novel of a comment now hahaha. Feel free to contact me and I can help you and give you some ideas/options that are out there. Or if you just need a friend to share your thoughts with, I’m here.

    Health is in your destiny :)

    • Thank you, Amy! I really appreciate the time you took to share this with me and for your great advice and understanding. I am unfortunately dependent on what these meds do. I went off of Remicade for 6 months and ended up with another stricture which led to my second surgery. My stricturing Crohn’s is relentless. My other symptoms break through the meds, but I can’t stop taking Humira or I’ll have to have a fourth surgery which I really can’t take. At this point, avoiding short bowel is uppermost on my list of things to prevent.

      I’m doing a lot better, now, re: hopelessness. I wanted to share my experiences with others so they’ll know they’re not alone. It’s something a lot of folks don’t like talking about, so, I of course had to bring it to the table. :)

      • Danny is on endocort, asacol, and prednisone for his crohn’s disease and of course I try to make sure he gets pears daily. You probably don’t have constipation issues but if you do and are on any type of narcotic for pain this can add to your depression. When I had really bad back trouble I was on panlor my depression got so bad it was unreal but I saw an infomercial on colon health and started to have a better understanding of the impact stationary feces can have on the body. Glad to hear that you are feeling better. Hope the New Year brings you amazing health, amazing friends and a better understanding of the difference you make in the lives of others.

      • Hey Happy New Year to you sweetie!
        I realllly really hope that 2013 is an overall good year for all of us health wise and just in general. 2012 wasn’t that hot of a year. I’m confident that that it can only get better :)
        & you r welcome! If you ever want to explorer safer options that actually work for your disease w/ out making your quality of life crappy, I’m here for you and can help you with it, so don’t forget and know that im here.
        I always like to reach out and be a friend to other people with a disease such as Crohn’s. There’s only a few people that I actually know personally that support me and show care, all my main support encouragement and compassion come from the people i’ve met in forums, blog & sites specific to this shitty disease. I need people to be undertstanding and the people that surround me daily, just don’t get it. You guys do because you live it and it’s refreshing to know I have people that can speak life not negativity into my day.
        Im really glad you are feelig better ad don’t feel that heaviness of being hopeless. Thats a scary place to be in. For me,hope is what keeps me going… ya know what I mean? I pray often that I always have hope and never get hopeless. I think it’s great you are able to express yourself the way you do. It’s a release of all the junk that could be building up and just letting it go is probably freeing in a way.
        Me on the other hand, I don’t and shouldn’t mention my daily life on my blog because all my postings are to inform and educate people from the articles I find when i research (which is a constant thing for me) . I think i need to keep my personal BS away from helpful info. It’s a constant mad house and things that are laughable & ridiculous happen daily.
        I was going to make a twitter account to mention the happenings of what goes on here… I’d call it something like “The domain of dysfunction” (i have to use the word “domain” cause my stepmom for some reason flips out when she is told that this house, that we all live in, is her domain… YO shit hits the fan to the point that the woman may snap..Oh, also when my brother calls her hitler! It’s just bad… and ya know it’s bad when his friends say it’s entertainment coming over here.. It IS entertaining because she’s unreasonable and seeks to control EVERYTHING. She wouldn’t be laughed at or called those names if her actions/requests weren’t so “my way or no way and right now… with everrrything”. She has so many names (house police, warden) due to her selfish controlling behavior that is not movable. It really is insanity within the walls of this domain lol. Hate to say it, but my father is 1/2 of the problem for allowing her to get this bad. It’s like sitting back & watching someone eat somethig toxic but saying nothing to the person & just letting her get more and more ill. Ok … enough.. No one wants to hear about a crazy battleaxe.

        SO, unless I made another blog or section of my blog made just for venting where my personal life is concerned, I can’t mix education with insanity. :) Ya know?

        Hope you are having a good day with your family. bye bye for now

        PS: PANIC: Ever write a post for it to just disappear on you. Whoa!!!.. that was close. That almost just happened… omg that was scary pushing that backspace.. It wasn’t a blank box… phewwww. ok bye

      • Thanks, Amy!! I would love to read a blog about your domain of dysfunction/insanity. ;) You can start another blog under a different name so no one would know it’s you. I’ve found it to be great therapy, especially when someone writes to tell me that my blog has put their feelings into words. I agree–we all need to stick together and I rely on the good people I’ve met online. You’re right–you truly can’t understand the disease unless you have it, although I have family members who really try and are always helpful. I’ve lucked out in that regard.

      • Hahaaha i probably should make one so I can constantly vent. Last year I really felt like I had to write out all the garbage that went down in the last 5-6 years. Like in a book that is targeted to anyone with an invincible illness, but I really have a heart for teens and can reallly connect with them well. I’ve just noticed that middleschool aged and highschoolers are drawn to me for some reason. To tell you the truth, i’m rather short and skinny and a lot of them think i’m young or something (hehee). But I think of being young with Crohn’s and can’t even imagine what life would be like going through the critical milestones that revolve around a disease like Crohn’s; especially with an unsupportive family. I really think there should be more support for kids , teens and young adults. There certainly isn’t enough support out there for young people. Being a teen is hard enough with friends and boyfriends, adding a chronic illness that most people don’t understand . The experience can be traumatizing. All the uncaring people and comments and judgements that came from my own “family” traumatized me and i’m older. From the point when I got sick in 2007, up to now, my family still is ignorant to the disease (except my sister … she a Dr.). They have no desire to even google the word “Crohns” , and my attempts to help my father undertand me better by sending him my blog posts, are a waste of time; he doesn’t even read them. They’ve been horrible during the worse timeof my life. It’s sad, but at least I know where i stand with them.
        You are very lucky to have a supportive and compassionate family. Im sure it makes the days not as hard.

      • It really does and I count my blessings every day. I think a blog just for teens or a book would be wonderful. I agree–I can’t imagine being a teen with Crohn’s or UC. My heart goes out to kids with IBD.

  4. That is painful to read. I really feel for you. I hope that everything will work out and the worst part of this will pass and you will have better days ahead.

    • Thanks, Levi. I wrote this in April of this year and posted it now to hopefully share with others who are now feeling this way. I’m in a better place right now thanks to the folks I’ve met (like you)!

  5. You got me HERE, CM. My heart breaks for what you go through on a daily basis. And your piece really allows the reader to BEGIN to understand . . . . I read above that you are in a better place than when you wrote this post, and I’m so glad to hear that, but I know it’s very difficult. xo
    P.S. Nominating you for Most Inspiring Blogger and Blog of the Year 2012. Not sure when I will be drafting that post, but telling you right now that you are nominated. There is a Facebook group for Blog of the Year, too.

  6. Great writing lady! Sorry it’s about such a terrible experience. Although, I haven’t suffered in this way I identify with some of your feelings in situations in my own life. Smashing into a tree, mother’s guilt, containing complaints, and loneliness, but it’s mostly through my own doing and I consider myself an upbeat, positive, somewhat healthy person. I appreciate your sharing to understand your experience better and of course, it made me cry and laugh. I totally agree, that although as mother’s we give children life, children give the world life, my children give me life.

    In reading the comments too, I also so relate to Amy and having to deal with a hypercritical, overbearing step-mother and a dad that relinquishes any responsibility to protect his own children from such a person and in fact, invites this person to take care. I sympathize with people that have to deal with this type of situation and revere anyone who would have to do it while being ill or being young and having such a misunderstood illness. Hopefully, these situations can help separate the ugly folk from the dear in life and I know it also makes you all stronger people.

    Here’s to a really good 2013 with super immune systems, loving, understanding families, and care, relief, & upliftment for all, especially for those who are down!

  7. Wow, this is one powerful blog. I am sorry you had to feel like this..but know your not alone. So many of us go through depression at one point. I myself have had it a number of times. You mention your family a number of times and use them as an achor. Remember they care for you and will help you out when you feel down. I know it is hard to talk about, especially with family, but they love you and will help you.

    And if needed, you have a great community here online that care also and will help you through your times of need. I am glad to have met you online and will always be here if you need.

  8. This made me weepy this morning, oh, your blogs always make me weepy. Sleepless night adjusting pain medication…this blog evokes a tremendous amount, mainly about the isolation of this all. Crohn’s and “everything after” Is NOT just “the stomach ache that never goes away,” as the first tv commercial I ever saw from CCFA told the world years ago. No. It’s agony, it’s all you said, and as you said, all the unknown. In the early 80’s, I was one of the first they gave mercaptapurine to, steroid resistant at 18. I downed those poison pills my dad brought me in my college dorm room, never forget it…it would save me or give me leukemia one day, but I wanted to live some more NOW days and deal with “one day” later…kids shouldn’t have to make daily choices like this. Or moms. Dads. Lovers should not have to worry about dates, eating, not eating, pain, bathrooms…my coworkers used to follow me to a bathroom I would sneak to off the nurses station and spread rumors that I was doing drugs because I escaped away so often! No one but an IBDer knows the pain and shame and depression. My ostomy, and all it’s near-death complications actually saved me. I wanted a career, I had one “their way,” always fearful of being homeless due to illness and not being able to work. The worst happened, I lost everything but I gained my sanity! No more stress of 12 hour shifts. I am cultivating, slowly, loves for other things. Really LIVING. Dying really does that. I always write too much, but your spark feeds my spark..and isn’t that how it should be. If I do “work” again, with my crohn’s, Addison’s and all the rest, I see clearly that all my life and child/adolescent psych experience have given me a hunger to reach younger people dealing with this monster so that they are not alone with 6-MP or steroid psychosis or Remicade or, like me, Lupus from Cimzia, or sepsis/ perforation 11 months into my We NEED each other. So we can enjoy the beauty of the trees and not slip so far as to see them as death agents. You are a brilliant writer, Christina. Keep writing and sharing with us. You are not alone. Thank you for indulging me the burden of my heart again…blog or book, I must put it all somewhere and I HAVE started. Xo

  9. Pingback: Not all Support is Good Support | The Crohn's Diaries

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