Pondering Death’s Visit and Living Your Truth

I’m having surgery in 4 days. Last week I met with the 2 surgeons performing the surgery. They are kind and personable and explain 0handsmedical terms in a way that a non-medical person can understand. They are respected in their field and are very good at what they do.

The main surgeon who is doing the more tricky parts told me he’d be treating me as if I were his wife or sister on the operating table. He’s talked to numerous other doctors to get their input. He’s studied my case, my files, my test results. He is confident and meticulous and if ever during the surgery there is a question, there are many, many colleagues he can call on for advice or assistance.

“But,” he told me, “I am not God.”

That was refreshing to hear because some surgeons do believe they are God. This I knew was the lead-up to him telling me what could go wrong during surgery. He said he had to tell me these things; not to make me worry or make me think these things would definitely happen, but to make me aware, to be honest, and to see that medicine is not a perfect science and things can go wrong.

“Of course,” I said.

He decided to start off with the worst-case scenario. I suppose it is best to get that out of the way. I mean, once that one is out of the way, all the other things that could go wrong seem quite insignificant.

“I have to tell you this. There is a an infinitesimal chance that death could occur. I mean, a 1% chance.”

I noted how he said it, I suppose to soften the blow. He didn’t say, “You could die,” which is what he meant, but he said it in a more passive way, like Death could possibly float into the room, say hello and go along his way.

Hearing it was unsettling. However, I understand it’s not very likely that it will happen. And the truth is, we could die at anytime for a multitude of reasons. It’s just a bit more worrisome knowing you are putting yourself in that position by choice (although a choice that is necessary for my quality of life).

When one has a child the prospect of death becomes a million times more sobering. In our younger, carefree days, we feel immortal, we don’t worry about death. Even I, who grew up with a chronic illness, did not feel threatened by being mortal. Now, however, the warning that my doctor gave me has been stuck in the front of my brain.

I talked to friends and asked them if I was insane or overreacting for wanting to write my son a letter,  a sort of goodbye, telling him how much I love him and always will and what I wish for him. Everyone said that I should certainly do that, if only to purge those thoughts and to take that worry from my mind.

I’ve started the letter about ten different times and have already written the words in my head for what feels like a thousand times. Each time I do; however, my eyes start stinging from the tears. Of course I don’t want to leave my son behind. And I won’t be! I think about those poor mothers or fathers who have terminal cancer and know they are dying and are going to leave their children behind. That is heartbreaking. I am grateful that my condition is nowhere near as serious as that.

Illness changes a person. You have a different outlook on life. You figure out your truth and try your best to live by it. I realize the importance of living with passion and getting my feelings all out there. I can see the frailty of life. So, while I’m confident this letter will not be read by my son next week, it will surely be a great reminder of what I want to share with him, teach him and how to guide him. My hope is to raise him and to make him feel loved and cherished and teach him what I think is important and let him flourish in whatever ventures he chooses. It also reminds me what I need to share with all those I care about.

I tell my son every day that I love him. I hug him and kiss him. He’s little and loves it now, and I will continue to do that until the day I die. I won’t embarrass him in front of his friends, but I will not stop showing him how much he means to me, no matter how annoying it gets to him. Every child goes through those years of rebellion and breaking away from his parents. But once he grows out of that stage, my hope is that he’ll remember how I never gave up on him, no matter how shitty he could sometimes act (because all teenagers are a bit crazy…or a lot crazy). I’ll still love him, no matter what.

For me, the greatest trait a person can possess is kindness. I’m not talking about wimpiness or a walk-all-over-me attitude,  but I wish for my son to possess a light that shines in his heart which pushes him to help his fellow human beings (friend or not) and would never allow him to hurt someone else on purpose. I already see this in him, but I will continue to teach him through my own actions and through discussions about his life experiences on how important it is to keep that light burning. If we are to leave a mark on this world, shouldn’t it be to make it a better place?  I want my son to be known as a good guy – sensitive, generous and sincere. We’ve all been knocked down, whether by illness or abuse or bullying or poverty or  prejudice. Everyone carries around their own share of pain. Isn’t it time to be kinder, be the bigger person and not perpetuate the hate?

It’s not aways easy to be kind, and that is why it takes courage. My wish is for my son to have courage and strength. He should stand up for what he believes in. He should stand up for anyone who is getting bullied or harassed. And most important of all, he should have the courage to show his feelings. I understand the courage that it takes, because the fear of rejection is strong. Also, you don’t know how the other person will react; most crushing can be when someone doesn’t react at all. However, in this one life we are given, we should not squander our feelings, but instead share them boldly. Secrets can diminish us, but those that speak their truth can stand proud in knowing they are not holding anything back.

I want him to discover his passions and live them. He’s 6 now, so he wants to be everything from an opera singer, spy, magician, superhero, video game designer and an architect. As he grows, he will discover what really excites him and makes his pulse race. I would never dictate what that should be. I will certainly be unwavering in my desire for him to have a passion for learning, because that’s where it all begins. From there, he can see where his talents lie and what he wants to do with them. I hope he sees my tenacity and learns the importance of never giving up. With dreams, goals and hard work, one can accomplish whatever they desire.

I wish for him to have true-blue friends. Of course this means that he needs to be a true-blue friend. He doesn’t need a ton of them, but a special few that share his interests and values, friends that can make him laugh and friends that encourage him to think about things differently. He should be loyal and forgiving and love them like family. True friends help you when you fall, and in our lives there are plenty of times when we need a little help.

My little boy will grow up and fall in love. He will probably have his heart broken numerous times, but when the time is right I hope he finds “the one” partner for him. Whomever he dates and ultimately chooses, he needs to show that kindness in his heart, communicate well, love with everything he’s got, be a gentleman and cherish and protect the heart he holds. He needs to know when to say “I’m sorry,” and love passionately. He needs to have patience and gratitude and never give up on that person. And hopefully, by showing him all the love I have for him and what a great person he is, he will know what he deserves – someone that will cherish him as much as I do.

I don’t think it’s bad to ponder the frailty of life and let it guide you. Although your ideals may be much different than mine, I believe it’s important to know what those ideals are. What message are you giving to the world? Are you living and loving with passion? Are you sharing your truth, your soul? I don’t want Death to visit me for a long, long time. But when he does, I don’t want there to be anything in me left unspoken.


Come Swim with Me in a Sea of Narcotics

Hi. I hope I got your attention. I wanted to remind you how the strength of your title can grab your reader.

I initially thought of this subject when reading some “Freshly Pressed” blogs yesterday. I came across this post:

“I Sold My Fat Jeans on eBay and Now I Want Them Back”

I read that title and immediately started cackling (which made my dog look at me weird, jump off my bed, army crawl under the bed and hide there for two hours). Anyway, what a brilliant title! It certainly caught my attention. I read the post which is a very well-written piece about a woman’s struggle with weight-loss. She hooked me and I was glad she did because it was a very relatable article. And, seriously, that title is amazing.

Let’s go back to the title of my post. It kind of sounds like it could be the title of a song, or perhaps an invitation. I apologize profusely if you believed that I actually have a sea of narcotics and was asking you, kind reader, to join me for a swim. Sadly, I do not own said sea. However, I will tell you how I came up with that title. Next week I’m having pretty major surgery to repair some strictures in my digestive tract caused by my Crohn’s Disease. I’m not jumping for joy to have this done, but I can’t wait to feel “normal” again. While meeting with my surgeon today he told me I looked worried. I told him that I was worried about the pain after surgery.

(There have been studies done on how redheads generally need more anesthesia and pain meds than non-gingers. Something to do with our DNA. No, I don’t get it either.)

I don’t know if my hair is the culprit, but I am not a wuss and have fought through awful pain at various times during most of my adolescent and adult life. But, in the past, specifically 20 years ago when I  had my last surgery, my doctor denied me stronger doses of morphine and other pain medicine. He actually said, “This should be a high enough dosage for someone your size.” It’s very frustrating when you feel like no one is listening to you or believes the level of pain you’re in and won’t help you out to dull that pain. I wasn’t asking to take a wheelbarrow full of morph home with me, I just wanted to feel semi-comfortable after being cut open. I told my surgeon that I was afraid that would be the case nest week.

He looked at me and said, “Stop. I don’t want you to worry about this anymore. Pain therapy has come a long way in 20 years. And we will have you swimming in a sea of narcotics.”

Of course this had me laughing (luckily my dog wasn’t there to give me strange looks) and I was relieved that I wouldn’t be denied. I mean, during my day-to-day life I am not drugged up, but I feel that after enduring a major surgery I should be allowed to dive in, float, swim and sink to the bottom of that sea of narcotics. It may end up being the best week of my life!

It’s also funny what inspires us to write, isn’t it? I suppose I could have used that title to write a poem about swimming in narcotics; perhaps I will be better equipped to do that after next week.

Keep creating! 🙂

But you don’t look sick.

I’ve been battling this thing called Crohn’s Disease for 31 years now. I’d had stomach aches from a young age and one wise doctor diagnosed me as having a “nervous stomach.” Is that a real affliction?

The night before my 10th birthday I woke up in excruciating pain. I’ve always been one to try to handle things on my own, not bother or worry anyone else, so at first I tossed and turned trying to find a comfortable position. That didn’t work. Then I thought, maybe I had to go to the bathroom. I sat on the toilet, bent over in pain, and nothing was happening. Maybe I had to throw up? Nope, I couldn’t do that either. There was NO WAY I was going to be sick for my birthday – it was my 10th birthday after all, which seemed pretty special. I laid back down and tried to muffle my groans with my pillow. The intense waves of pain were becoming more unbearable. I was sweating. Finally, I called out for the first person that comes to a child’s mind: “MOM!!”

When this story has been revisited with my family, my parents always add that their feet both hit the floor at the same time. It must’ve been some yell. Not a siren’s call, but a desperate howl of pain. They came in and asked me what was wrong. I could barely speak. I looked up at them, pointed to my stomach and whispered, “tummy.”

Within minutes my dad carried me to the car. I remember laying in the backseat and wondering why my dad was running red lights. It must’ve been 3:00 a.m., so no one was out. It was empty and quiet in the car, with my parents not making a sound.

The rest of the situation is a blur. I found out later that I was in shock from the pain. The doctor in the ER believed it was appendicitis. Once I was unconscious, the surgeon discovered a blockage in part of my intestines. So, only after cutting me open was I able to be properly diagnosed. There is this really pathetic-looking picture of me in Intensive Care with a birthday cake held before me with 10 candles blazing. My family and the nurses sang to me and I think my sister blew out the candles for me. The nurses enjoyed the cake which was fair because they were very kind to me and held my hand when I was scared.

Crohn’s Disease is an autoimmune disease; no one understands why it occurs and there is no cure. Treatments are iffy. Throughout my life I’ve felt like a lab rat, with new drugs and therapies being tested on me to figure out how to make me more comfortable. Just having an autoimmune disease is strange; the body’s immune system becomes misdirected and attacks the very organs it was designed to protect. So, my immune system sees my whole digestive system as the enemy. Weird, huh?

When I was first diagnosed, very few people had heard of the disease. But, in my 5th grade class I was treated like a rockstar. Everyone wrote me get well cards, we exchanged pictures, I was sent teddy bears and trinkets and I felt special. I remember returning to school and everyone was so happy to see me. I wasn’t treated any differently, other than they wanted to hear my story, wanted to see my battle scars. I was healed, I was loved.

The adolescent years were much different.  I was out of the comfort zone of my tiny elementary school and mixed in with students from different neighborhoods and schools. It’s really a time that you’re trying to figure out who you are and where you belong. My friends from elementary school didn’t abandon me, but they moved onto other things. The disease made me fragile, so I wasn’t in the sports crowd. I don’t think I even had a crowd. I did like music and singing so I joined choir. I remember being excited when the Bears won the SuperBowl, sporting blue and orange and dancing to the SuperBowl Shuffle, but the rest of it is pretty much a blur. I guess it’s a time I mostly don’t want to remember.

There were no support groups around then and of course no Internet to find blogs or Facebook pages about Crohn’s. I isolated myself. I only felt comfortable at home, locked in my room, listening to ’80s music, mooning over Bono and reading books, books, books. I never told a single soul that I had a disease – and it’s not a sexy one. Symptoms include bloating, gas, diarrhea or constipation and vomiting. Yeah, not hot. So, I made my own private world by writing stories, falling in love with fictional characters and musicians, dancing around to Madonna songs and generally feeling alone.

I had convinced myself that I would never, ever fall in love. Or at least, no one would fall in love with me. Who could put up with my teeter-tottering health? Wouldn’t a boy want a girl who was “normal?” It didn’t help being made fun of for my appearance, which I think is one of the reasons it took me a long time to think I was even remotely attractive. I was on Prednisone, an anti-inflammatory steroid that is The Devil. There are lots of nasty side effects, but the one I hated the most at the vain age of 14 was the “moon face” it gave me. I remember standing on the stage for a choir performance at school. I looked around in the audience and locked eyes with one of my classmates. This particular boy proceeded to puff up his cheeks like a chipmunk. I was devastated. He made me feel hideous in one glance.

I’ve been hospitalized, put on shitloads of drugs, and had another surgery 20 years ago. When one has a chronic disease, it’s very likely that he or she gets used to the pain. And each year the threshold goes up a bit. I’ve been on medications which have mostly controlled my disease, but for the last 5 years I’d have one really bad day and two good days. Or, two good weeks and three horrible days. The tests they do on someone with a disease of the digestive system are worse than you can imagine, and I’ve had tests every year for the past 5; sometimes two, three or four in a year. It has been 5 years of going to the doctor, undergoing tests, finding nothing out, rinse and repeat.

Three weeks ago I woke up with excruciating pain in my belly. I vomited until there was nothing left. That didn’t make me feel any better. Instead of calling for mom, I had to call for my soon-to-be-ex husband who currently sleeps in the basement (yeah, weird – that’s my life). I was desperately in pain. He called the hospital, and the nurse said to bring me to the ER. Having gone to the ER plenty of times, I know it’s a lot of waiting and more tests while you’re STILL in intense pain. I did not want to go there. My mother-in-law recently had knee surgery so I asked my husband/not husband if he could call and see if she had any pain pills. She did. I know you’re not supposed to take anyone else’s pills, but they did make the pain tolerable and helped me go to sleep. the next day I visited my doctor and he determined I should be admitted to the hospital.

I’ve now found out that I need to have surgery. The scar tissue from my two prior surgeries has narrowed parts of my digestive tract and it needs to be removed. It will be a tough surgery – I know it is painful for quite a while and I’ll have to rely on the help of others. It’s different now. I have a son whom I completely adore, and in a way I feel like I’m letting him down. Before when I got sick I had others taking care of me; what happens when the one who you depend on is in the hospital or bedridden? However, he may see me at my worst, hooked up to machines, IVs and catheters everywhere, but he’ll also see me overcome it all and see me at my best.

I’m grateful to have a family that has been through this a few times that are willing to help me and entertain my son while I’m unable. I can either sit back and say it’s a fucked-up year, or I can look for any good in the situation. It will be a tough road, but I can handle it. In the end I will feel better, I’ll be Jill again. I’ll be Mommy again. In the meantime, perhaps this convalescing can help me learn things and grow. Waiting for the surgery means a liquid diet (and I don’t mean wine), lots of meds and rest. I’ve been reading, writing, listening to music, practicing meditation and studying a bit about Buddhism. I know sitting here worrying (though at times I do) will just strip today of its peace and not change a thing.

I’ve had to cancel social engagements, but I’m no longer isolated. Over the years I’ve realized that I have nothing to hide. I have a disease. It sucks, but it doesn’t define me and never has. Now when I tell people that I have Crohn’s they usually tell me that their cousin or nephew or neighbor’s uncle’s son has it, too. I think it’s made me more empathetic and sensitive towards other people. All those years ago I didn’t give anyone the chance to know about my suffering. Anyone who doesn’t have Crohn’s or IBS really can’t fully understand, but they can be an ear that listens to you when you’re scared, send you a good book to read, make you a fun playlist to listen to and just sympathize and say, “I’m here for you.” I’m quite lucky to have some thoughtful friends and caring family members.

They call Crohn’s Disease an invisible disease because to most people I look “normal.” Let me tell you, it’s not fun to hear someone say, “But you don’t look sick,” while I’m going through hell. And sometimes people who haven’t experienced a chronic illness might not understand why I’m acting differently. Sometimes I’m hurting too much to talk or conversely, maybe I just need my back rubbed. Other times I need to be alone and try to expunge all the details from my mind and focus on healing. I hope to never hurt anyone’s feelings, but when pain takes over, little else matters.

You can’t stop change and certainly there are a lot of changes going on in my life now. But I have a great support system and on the other side of this storm are clear skies and new beginnings. Sometimes you have to suffer before you get to where you want to be. And I have no doubt that my son and I will get to where we want and need to be. Life happens – it’s how you react to it that counts.