Chronically Koanani

A Beautifully Broken Journey Through Chronic Pain

Suicide: On My Daily List


Suicide. It’s a scary word. People don’t speak it nearly as much as they think it, at least not in most circles. It’s not discussed nearly as often as it probably should be in our circles in my opinion. I make no bones about it. I literally think about it every single morning. I make a mental list of the pros and cons of ending my life every morning. And that list changes, but not as often as I’d like.
I’m not even especially depressed, or at least not as much as I think I should be at this point. I don’t want to kill myself. I just want to kill my body, or more specifically, kill my pain, and I’m fairly certain that is not a possibility, and will not become a possibility in my lifetime, since I’ve spent the last 20 years of my life unsuccessfully trying to make it at the very least a possibility. The pain is never going to go away. I will never get used to the pain. I will never gain a tolerence to the pain. There will never be a cure for the pain in my lifetime. Even the lack of a light at the end of the tunnel does not deter me mentally. I know my illnesses cause others to be uncomfortable, and I am a burden physically, emotionally, and financially on my family. Even though I have every reason to commit suicide, or at the very least be clinically depressed, I try to stay upbeat. I try to keep a sunny, positive disposition as much as I can for my family, for my daughter, because I know they need me, and possibly for my own sanity. And I know they don’t need me to be depressed all the time. I don’t want others to be uncomfortable, so I lie and downplay the pain. It’s usually pretty easy to do, since I’ve become a great liar, lying to myself all the time.
Besides, it just doesn’t feel right to me to be depressed all the time. It’s not me, and I don’t like the way it makes me feel. That’s not to say there aren’t times I “go dark,” and drop out of most aspects of my life for a while until I can overcome the depression that is simply unavoidable with chronic illness. But generally, I try to push through, keep going, one day at a time, one hour at a time, and sometimes, one second at a time.
Even if one is able to resist the depression and anxiety that go hand-in-hand with chronic illness, it is just not possible to not think about suicide. I think about it every day. I contemplate how I will do it. I used to think I’d do it in the most convenient, painless, and obvious way- overdose of the medications I have on hand. Then the country became obsessed with the “Opioid Epidemic”. I realized that even if I left a note outlining everything, statistically I would become another “opiate overdose.” I don’t want to contribute to the illusion that chronic pain patients are drug addicts who overdose all the time. That is an entirely different subject, though. So, I’d probably just leave the car running in the garage- quick and painless. It has been very difficult to come to terms with the fact that I think about suicide every day. I think it’s a selfish act, most of the time. I don’t want to leave this life. So, if I don’t want to leave this life, why would I think about it every morning when I wake up in pain? Or all night long, when I can’t sleep because I’m in pain? And that’s just regular pain. When I go through a flare, every muscle in my entire body seizes up. I’ve cracked teeth from clenching my jaw so hard because the pain is just too unbearable. I can’t take in a full breath because even breathing makes the pain worse. I try to deflect the pain by causing pain to another part of my body, just to overload the part of my brain that processes pain and give myself a little relief. Those are the things that make you think about suicide every day.  Maybe not even suicide, but thinking about the cessation of the pain. After 20 years of fighting pain every waking moment, or fearing pain flares, losing control of your life to pain, having to arrange your entire life around the pain, or losing friends and family because of the pain, you would do anything to stop it, too, because you don’t even remember what is like to not be in pain. If I am lucky enough to have a day with low pain or tolerable pain, my body is so exhausted, so depleted of any kind of energy from constantly working to fight the pain, that I feel like there are cinder blocks attached to each of my limbs, and all you can do to recover a little is sleep the entire day. It is neverending. What can you do? Naturally, after years of learning there is no way to cease the pain, except through the cessation of the body functioning, your mind turns to suicide. You don’t want to, but your body does.
It’s a strange dichotomy when your head and heart want to live, and would never consider cutting precious life short, but your body just wants to give up sometimes, or just take a break. Just the thought of another day of fighting and lying is unfathomable. Your body has betrayed you, and you want nothing more than to just have one day, or even just a few hours without pain, because you don’t remember what it feels like to not have pain or to just be without pain.
I don’t want to commit suicide, but my body wants to, and sometimes it can be tempting to listen to your body when it really needs a break. Not just the little breaks that a double dose of antihistimines and a sleeping pill will give you- forced sleep to hopefully allow your body to recover and repair a little bit before the battle starts again. But a real break from the constant, relentless pain. That’s why you think about suicide. It sounds selfish on the surface. Your body wants to stop fighting, but you also want to relieve the burden to your family. I know many people will say that’s a cop out, but when you have burdened your family phyically, mentally, socially, emotionally, and financially, you start to wonder about your purpose in this life. You aren’t the same person you were before you became ill. The person your spouse chose to marry, the person your children knew they could always count on for anything, the person who had friends and family to care for, the person who was a productive human being who contributed to society is gone. That person is dead already, so it’s not a big leap to think about offing this body, the body that has betrayed you, the body you wish you could get out of in any way possible.
It’s okay to have these thoughts. It’s not wrong, and there should be no stigma attached to it. Suicide happens much more often to people in our positions than we realize. Many overdoses considered accidental were probably suicides, if not intentional, certainly not unintentional. We need to keep talking to each other and not be afraid or embarrassed for thinking about it. We need to be honest with ourselves and with each other about suicide. The more we address it, the more educated we become, the more often we can admit when we need help, and also provide help to each other. Even though I know realistically there is no statistically significant chance this pain will ever be gone, I cannot give up. Even though I know I am a burden on my family, I cannot give up. Even though I know I will never have real physical friends, I cannot give up. Even though my body begs me for a reprieve, I cannot give up. I have not. I will not. I may be a very different person now, reduced to the singulair element of a voice. But even a single voice can be powerful. I want to use that voice to remind you that you have to hold on to something. Hold on to the love of your family. Hold on to the memories. Hold on to the good moments, no matter how few and far between. Hold on to each other. Hold on to hope. Think about the warrior you are, every day, and how you have a perfect track record of surviving each and every battle in this war that our bodies have waged against us. Celebrate the little things- a hug from your child, the five or ten minutes your body gave you a break today, the sunshine on your face, even if it’s only as you look out your window, the comfort you got from a fellow warrior, the hope that you gave a fellow warrior. You matter. You are loved. You are needed. And that is reason enough for your cons to outweigh your pros in your suicide column.


Sideways Side Effects


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One of the worst parts of being chronically ill is having to take many medications to try to maintain something resembling a life. I take a pharmacy’s worth of medications for my chronic illnesses. The worst part of these medications are definitely their side effects. I’m sure you’ve seen those medications on television of which they are required to list the side effects- and they sound more and more terrifying until you think, why wouldn’t you just deal with the heartburn, rather than risk the explosive diarrhea and projectile vomiting? The side effects are worse than the original problem. Unfortunately, when you are on several medications that can’t be avoided, you also get several horrid side effects that can’t be avoided. When you tell your doctor you’ve been experiencing these awful side effects, the doc will prescribe you several more medications to help those induced side effects, and those new meds have terrible side effects all their own. It’s just one of the catch-22 circles of hell with a chronic illness.

Some of the insufferable side effects I deal with on a daily basis include: edema, swelling of the legs, arms, hands, ankles and feet, severe rapid weight gain, blurred vision, loss of vision, severe hair loss, excessive sweating, nausea, vomiting, runny nose, dry mouth, drooling, incontinence, constipation, difficult urination, headaches, stomach pain, weakness, joint pain, muscle aches, muscle weakness, fatigue, insomnia, drowsiness, mood changes, anger, irritability, depression, anxiety, nervousness, restlessness, dizziness, loss of balance, memory loss, loss of concentration, cognitive loss, decreased libido, pain with sexual activity, loss of teeth and gum tissue, and, ironically, many of the medications cause pain. Why is there a pain medication that can cause pain??

Once, just once, I want to be told by a doctor for my chronic illness, it is imperative that I now have to replace all my medications with just one medication that will cause the following side effects:

  • Increased energy
  • Disappearance of wrinkles
  • Increased IQ
  • Full, luscious hair
  • Decreased cellulite
  • Multiple Orgasms

Gotta keep hope alive!

Spouse or Primary Caregiver?


What happens when your spouse is also your primary caregiver? Well, many things happen. The romance- yeah, say goodbye to that. Nothing romantic about having your spouse dress the bedsores on your ass just before bed. All that stuff you told each other you would do for one another when you grew old and wrinkley together? Not cute when you’re both in your 40’s. One of the other things that sucks about this arrangement is that your spouse always has ammo to throw at you that you can’t argue against. You haven’t cleaned the house properly in 15 years. You don’t do the everyday chores you used to do. You haven’t taken care of your kid(s) the way you used to. And my favorite that he just decided to bust out- he is truly alone because he made the decision to marry someone who was sick.

Can’t argue with that, but it still hurts like hell when he says it. You just don’t want to burden your family anymore. I have to say, I think about how I am going to off myself almost every day, and I wake up looking for reasons not to do it every single morning. Hearing these things, although usually said in anger, is certainly not good for the pros and cons list I have in my head at all times.

Funny thing is that I feel lucky to have someone to take care of me. Many of us don’t even have that. We get older, our parents die. Family doesn’t believe what they can’t see, like most all humans. Or they think we are drug addicts. Would they ever tell a person with cancer who is taking several different medications, many of them the strongest pain medications, that they are a drug addict? We can’t see cancer. I wonder if it’s just because we’re so familiar with cancer. I think about how many times I was misdiagnosed with Fibromyalgia for ten years because doctors were looking for an alternative to telling patients that the pain was only in their heads. It was a last resort dumping ground for undiagnosed pain. Now Fibromyalgia is recognized as a real disease and a diagnosis by symptoms can be confirmed by a simple blood test.

So, do we give our spouses or partners a pass more often than we would if we weren’t sick? You bet we do. Because we have to. All of my friends left. I don’t even remember the last time I had a friend stop by to see how I was doing. Different friends had different tolerance levels and different sized hour glasses before their sand finally ran out, but I don’t have anyone who stops to check on me, not even the “family”, and I use that term loosely, who live just down the road five minutes. I don’t know how they reconcile that, what they have to tell themselves so they can keep thinking they are good people or so they can sleep at night, but I know the truth. And my spouse definitely knows the truth.

When you are sick is when you need people the most, and it’s exactly when they leave, because things got hard or uncomfortable.
I suppose it’s just as well, because when you have a chronic illness, you can’t afford to have any extra negative energy around you. It will just add more cons to your list than is necessary.

All I can tell you is that our spouses/partners are in almost as difficult a position. There is no handbook. No one is prepared for an illness from which you will never recover in your lifetime. No one should have to be a primary caregiver for their 27 year old bride. So they may continue to spit that nasty venom at you occasionally, but give him/her a break. Maybe just remind them you want nothing more than to turn back the clock to before your illness when your life was fucking awesome. You may not have described it that way back then, but now? Yeah, now being able to walk to get the mail would be fucking awesome. Picking up the dog shit in the yard unassisted would be fucking awesome. Taking out the garbage by yourself- fucking awesome. It’s all about perspective, isn’t it?

Guilty As Charged

One of the worst feelings I have almost as much as pain is guilt.  I see the little inspirational memes on my support group sites that say, “You’re not unreliable, your health is.” It makes sense, but it goes so much deeper than that. And let’s face it, most other people don’t often see it that way. And part of me understands, because even though I have this disease, I don’t understand why some days you have somewhat tolerable pain and a bit of energy which allow you to bathe and possibly leave your house (with the aid of a pharmacy of medications), and others are so intolerable, they are spent writhing in agonizing, unrelenting pain so bad that you actually consider ripping your own hair out, just to try to redirect the focus of the pain. If your scalp is in immense pain, your body won’t be able to keep up processing all the pain in other places, so the focus moves to your scalp, or elsewhere. Yes, I speak from experience about that. None of this stops the overwhelming guilt you feel, though. Your body has betrayed you and failed you, and worse than that, this causes you to betray and fail everyone still in your life, when you know what it has taken for them to still be sticking around.

I hate not being able to be counted on for almost anything because I never know what my pain is going to decide to do to me not only day to day, but hour to hour, and even minute to minute. It really does take a fucking saint to put up with this, so there’s always that part of me that almost understands why we are forgotton. Almost. Then I always put myself in another person’s shoes. Is it that difficult to send out an extra invitation or make one more phone call to invite the cripple? I didn’t even get invited to my own brother’s wedding in Vegas because they assumed I wouldn’t be able to make the trip. When I got married in Hawai’i, I still invited him and others I knew weren’t going to be able to go, but I wanted them to know I was thinking of them and wanted in some way, although not possible, to include them. It just becomes too easy for people to forget about you when you miss out on so much.

There’s such a duality between getting sick temporarily and being chronically sick. When someone gets sick, people come out of the woodwork to visit you, bring you flowers or send you cards. They call you often. They even offer to clean up your house or help with the laundry, and maybe even drop off a meal for the family. Well wishes galore!  But when you’re chronically ill, none of that happens. Just when you need help the most, everyone disappears. This also causes guilt. You’re angry with your body for betraying you, and you feel guilty for being sick, for had this not happened, you’d still have all those people in your life. Even though your disease did a tremendously expedient job of weeding the weak, worthless people out of your life, you still feel isolated and lonely, and guilty that you yourself had little say and even less to do with this process.

I am drowning in guilt. I feel guilty because my husband got shafted. I am unable to give him the marriage with which we started. Obvious sexual problems due to pain give me terrible guilt. I always felt we had the creativity to overcome some of these issues. However, shortly after my husband and I learned about the severity of my illness, he firmly decided to become my primary caregiver and ceased being my spouse. I think it’s just too much for him to handle. Everything falls on his shoulders, and it causes tremendous stress in our household. I wish we would have gone to a therapist who could have prepared us for some of the obstacles we were going to face as a couple. Now, I feel like my husband is just trying to keep his head above water, and for that reason has refused to go to therapy with me. It’s difficult to see how things can get better when all you do from the moment you wake up to the moment you fall in to bed is try to just get through the day, trying to hopefully get everything done. And it’s my fault that our lives are this way because I am the one who got sick and tagged out of life.

Believe it or not, there is nothing more that I want to do than chores around our house, which has turned into one giant hoarder mess since I haven’t been able to clean or even get after my family to clean. Ever try to get a teenager to clean the kitchen counters by yelling from your bed in the back bedroom? It simply doesn’t happen. And all those little nudges you give your spouse to finish a chore over the weekend end up being screams from the back bedroom, asking whether he’s done it, yet. Yeah, this brings nagging to a whole new level. Then there’s this bizarre counter-guilt martyr situation that happens. When I do feel okay enough to try and accomplish something around the house, my spouse doesn’t want me to cause myself pain by doing chores, so out of a mix of guilt, care, and quite a bit of anger, he stops what he’s doing to finish the chore I tried to start, screaming about why I have to do that to him at that moment. Fucked up guilt all around. It’s a guilt fueled catch-22 that results in anger and resentment, and chores that never get done. I’ve tried to explain that doing chores when I am able makes me feel normal. But he associates the inevitable pain I have later with me trying to do the chore. He can’t seem to understand that pain was coming regardless of whether I tried to do anything. Then he feels guilty, and I am holding tears back, white knuckling my blankets, waiting for him to go to sleep so I don’t have to visually hide the pain anymore. It’s ridiculous, counter productive, and something that I don’t think will ever change. And it makes me feel terribly guilty, but I will not give up.

I also feel tremendous guilt about how I have single-handedly knocked our family several notches down the socioeconomic ladder, and have several times feared losing our residence from the enormous financial strain having a chronic illness has put on my family. And we have pretty good insurance. But because I am unable to work reliably, we are a single income family. By itself, that wouldn’t be bad at all, but when you add the cost of doctors visits, procedures, surgeries, time taken off work by my husband to care for me, medical devices, implanted medical devices, walkers, wheelchairs, and the outrageous cost of the pharmacy of medications that I have to take every day. I honestly don’t remember the last time I bought anything for myself. Wait! I know I bought two bras a couple years ago, but we were on vacation, so I splurged. Who the fuck goes on vacation and when thinking about splurging, buys underwear?? Someone racked with guilt that they are costing their family money they don’t have, that’s who. And it not only fills me with guilt, but breaks my heart that I feel like we’ve had to turn down my daughter’s requests for normal teenage items. The worst part is that she feels guilty asking for things she wants or needs because she knows our situation. That is all on me. I am the cause of the financial strain. And the financial strain causes stress. The stress causes strife and resentment. The strife and resentment cause palpable tension. Palpable tension causes misdirected anger. All of that causes pain.

I feel guilty for each and every time I’ve had to cancel an event. Not just a night out (Ha! What’s that?), but I’ve missed countless Christmases, birthdays, family parties, school programs, events, and productions with my daughter, and even a vacation to my in-laws in Florida for Thanksgiving. My daughter is a sophomore in high school, and I’ve never even been inside of her school, let alone met any of her teachers or anything. A phone conference with the teacher is not the same, and it certainly says something about me as a parent- that I can’t be bothered to drive in to the school to meet them in person. At least that’s what I’d be thinking. And there’s nothing that makes me feel more guilty than when my daughter mentions it. She’s missed too many events, programs, parties and outings because I’ve been unable to drive her,and my husband has been working. My poor daughter has had to shop with her dad to buy her bras and panties. I’ve already begun setting aside some money to pay for the years of therapy that she’s going to need for that. I haven’t been able to take her shopping, except the occasional Wal-Mart or Target trips because they have motorized carts. These are things that I will never get another chance to do again.  Pain has kept me from doing even the most basic things with my family. Nothing causes more guilt than missing an event for my family, except causing my family to miss an event because of me. I try to plan no more than one outing a week, because it takes a few days for me to recover from whatever event I attend. And you know when I say event, I usually mean doctor’s appointment. I feel terrible guilt. Guilt causes stress. Stress causes more pain, and it’s the same damn, vicious, never-ending cycle.

I feel the guilt more than I feel the pain. It hits me like a tsunami, and I can’t get my head above the water long enough to take a breath. There are only so many times you can convince yourself that it’s not your fault, it’s your body’s fault. And it doesn’t help that when I am able to attend an event, I look like I’m not doing too badly. I converse with as many people as I can because I don’t often get to see people in the flesh. I try not to use my wheelchair unless necessary because it makes people uncomfortable. And I, for the most part, look pretty good. What people don’t know is that it has literally taken me two days on average to get ready to leave my house for an event. I also had to take an almost illegal amount of various medications to be able to pull that off, and that I am carrying a pharmacy inside my purse and downing handfuls of medications throughout the event just to make it through. And I’m pretty sure people don’t know that attending that event will sideline me (bedridden) for the next week. The only thing I am left able to do is to try to forgive myself once in a while and remind myself that people usually go by what they see, which makes it more difficult for them to understand the already enigmatic syndrome of chronic pain. The people I do see are the people who are sticking it out with me, and that is more than worth the pain of getting ready and the pain following. Those are the people that are pure gold. In a way, people with chronic disease are very lucky because our situation has weeded out the people who don’t really truly love you. The last thing I must do is enjoy the hell out of the times I am able to attend. I may pay with pain to do it, but it is so worth it!

Me, Myself and Isolation


One of the most sad and complicated consequences of being in chronic pain is isolation We all eventually feel it, even from the few people who stay in our lives. It is a painful inevitability that, no matter how close you think your friends are or how big and wonderful your family is, you will suffer, along with unrelenting physical pain, the as excruciating pain of complete and utter isolation. I know, you think I’m being dramatic. I wish that was the case.

No one ever believes it will happen to them. If you’re young when you become sick, you have several close friends and you are usually closer to your family. You haven’t had time to grow apart from and resent anyone, yet. If you are older when you are diagnosed, you have a smaller circle of friends, but they are closer, and you’ve been through much more with them. You’ve also had time to weed out the whack-o’s in your family, so the family you do keep in touch with is tight knit. It really doesn’t matter the state of your relationships prior to chronic pain. You will come to the inevitable conclusion that you are alone in this fight.

I remember when I first became sick, searching for a diagnosis. Friends and family come out of the woodwork to help you. You have so much support, you don’t know what to do with all of it. You absolutely wreak of positivity and strength. It doesn’t even matter what your diagnosis is because with all this encouragement and support from everyone, you are going to beat it. After you’ve gone to all the regular doctors, the specialists recommended by Aunt Iris, Aunt Mary, and Aunt Rose, your mom’s cousins on her dad’s side, your dad’s cousins on his mom’s side, your sister’s best friend’s uncle, and the amazing specialist your friend’s dog groomer read about in the newspaper, and you still don’t have a definite diagnosis, friends begin to trickle off. Slowly at first, but after five or six conversations about how you’ve gone to another specialist without a diagnosis, well, who wants to hear about that?

This is when the friends really start leaving. And after you’ve seen all those specialists that the family has recommended, you’ll find their calls begin to stop, too. There are still a couple of hardcore friends, though, and a few family members left. You continually see doctors and specialists, racking up some funky diagnoses along the way, and have invasive tests and procedures without any answers. But then it happens! You found the specialist who gives you the diagnosis that actually fits your symptoms!! Praise God, and Buddha, and Allah- you also picked up a couple different religions along the way because, at one of your low points, when you were watching tv at 4 a.m. because you were in too much pain to sleep, it made sense at the time to bet on all the big religions, increasing your odds of finding a miracle.

So you start making calls to get in touch with all the “friends and family” you hadn’t spoken to in so long. You tell them the good news, but they have the same question you do- When are you going to get better? That’s just it. Doctors will either avoid answering that question or outright lie because they just don’t know. They don’t want to smash your hope or ruin any kind of placebo effect that may come from the pharmacy of medications, herbs, ice, heat, meditation, biofeedback, Reiki, vitamins, acupuncture, kava, kratom or any other damn thing you will try just to make the pain lessen enough to give you some semblance of a life. The couple friends you still have, you may be able to keep around and amuse with your stories of the shit you actually tried because somebody’s cousin read on the internet that it helps with pain. Those conversations will become fewer and farther between, and eventually, after having to cancel your attendance to too many events, you will no longer be invited or called anymore. It’s simply become too awkward, even between friends you felt were your chosen family. Friendship is a two-way street, and you will have less and less to give, until you only have your heart to give, and that’s simply not enough for most people.

Family may stick around a little longer, mostly out of obligation, but they, too, become tired of the cancellations. The irony lies in the fact that this is when you need your friends and family the most, when you are so drained and in agonizing pain, that you have the least to give. But it is precisely because you no longer have much to give that you become isolated. Even if you are fortunate enough to have family stay and support you, you will soon realize that being in chronic pain puts you in a totally different stratosphere from anyone you used to know. My husband is sleeping next to me right now, yet, he is worlds away. He is a good man who got shafted, just like me. He’s never once said he’s tired of my complaining. Shit! I get tired of my complaining. So I stopped. I lie to him, just like I lie to everybody else, to make them feel more comfortable. Conversations with my mother, whom I had never been closer to in my life, have all but become just about the weather. It took me years to convince her I was not a drug addict and I didn’t just have a “low tolerance for pain”. I’m not even going to go into the “it’s all in your head” shit I’ve taken throughout the years. We all have the occasional phone friends. After the always awkward, how are you?, and the obvious lie of “I’m fine”, and after you’ve exhausted their suggestions of internet cures and simply getting outside for fresh air and exercise, it seems there is little else to say.

So here we are, completely isolated. Those of us that are lucky have found comfort, support and friendship in pain support groups on the internet. Most of us have never met face-to-face, and probably never will, no matter how close we live to each other. But therein lies the comfort. You know another pain warrior will understand. They don’t get offended when you miss a phone call because they know exactly how you’re feeling without having to ask. And there’s no guilt involved in missing an appointed time to talk or message. With anyone else, even my spouse, I would feel tremendous guilt missing a prearranged phone call because of pain or fatigue.

The only good part of this disease is that I only have people in my life who truly care about and love me. It weeded out all the fake friends and family members who proved pretty quickly they couldn’t be counted on when it really counted. I am tremendously grateful for the friends and family who have stuck it out with me. We’re still learning how to best deal with this disease together. It’s not perfect, but we keep trying, and that’s what’s important. The best way to combat the inevitable isolation we feel from most every other human being on the planet is communication and education. I think many of the people I lost along the way may have stuck it out at least a little longer if both of us knew more about how to deal with someone who has a chronic illness and someone who loves someone with a chronic illness. If we can acknowledge the awkwardness of not knowing exactly what to say, we can laugh about it and get past it. But it takes work on both ends. There’s always going to be collateral damage along the way with a chronic illness, but if we can educate ourselves and others, communicate honestly with each other, and give ourselves a break occasionally, there will certainly be a lot less isolation and a lot more laughter, which I also read somewhere on the internet cures chronic pain.


Late to My Own Funeral


Sometimes, when I reflect on what my life has become, I ask myself what would be the most important thing I would like to have known in the very beginning of my illness. No contest, there is one thing that I wish someone had told me right off the bat, that I wasted years battling. The person I was before I became sick is gone. Dead. Never coming back. The life I had before becoming sick is gone. Never going to be the same again. I can see why no one would’ve wanted to tell me this because, of course, there is always that miniscule chance of a religious miracle cure, or maybe the placebo effect. At the time, I would never have believed them. Several doctors, specialists, procedures, surgeries, and years into the process, I certainly would’ve been much more willing to listen.

That is by far the biggest aspect I wasted the most time on- denial. In fact, I remember when my handicap placard came in the mail, and it was blue. I thought for sure someone had made a mistake. I was supposed to get the red one- the one that lasts for six months. Why was mine blue? Blue was permanent. It was for old people. Or old, sick people who had no chance of getting better. They had obviously made a mistake, and I would be sure to tell my doctors that I didn’t need blue. I wasn’t going to be a blue kind of person. I was going around in circles now with the doctors and specialists, but I would get a diagnosis and take the meds and get better. Right?

It took me a long time to wrap my head around the fact that, no matter how hard I worked in physical therapy, or what combinations of medications I took, I was not going to get better. I was not going to be able to do the same things I used to be able to do. I had been living in Hawai’i for the few years before I got sick. I went to school at the University of Hawai’i, and one of the subjects I studied was geology. I lived on the world’s most active volcano, so it was natural to want to know everything about it for me. I hiked the lava fields for miles like it was nothing. I played volleyball every week and paddled (rowed) canoes. Every afternoon, I made sure to swim a half mile out into the ocean, and a half mile back in to shore. I was more than just active. Shortly after, I had a baby girl to take care of every day. I loved nothing more than walking along the local riverwalk with her in her stroller. Eventually, though, I started to slowly realize my life was never going to be the same physically. I wasn’t going to be able to care for my daughter the same way, and eventually, I wasn’t going to be able to care for myself the same way.

The next hardest thing I had to do was ask for help from other people. There is nothing more humbling, embarrassing, or funny than having to ask your husband for help getting off the toilet because you are in too much pain to stand up from it by yourself. As things got harder for me, I still always had that idea that I could get back, even as my husband was having to help me dress. Maybe not to where I was, bounding around on active volcanoes, but at least to a point where I could walk without assistance. As the pain chipped away at my body, it also began to wear my brain down, as well. Even after getting my first wheelchair, I told myself it was temporary, and I only needed it for long distances. Until I needed it more and more often.

The pain changed my life physically, mentally, emotionally. Friends and family began to disappear, tired of helping or deciding I was a drug addict, even though I was just following my doctor’s plan. They didn’t stick around to learn the difference between addiction and physical dependence. The person I was when I was healthy simply no longer existed anymore, and after years and years of holding on to her, I had to let her go. And I needed the time to grieve her, and grieve the life I had being her. I had to face that there was no miracle cure. I am in unrelenting pain every single day, and I am going to be in unrelenting pain for the rest of my life. There is no light at the end of the tunnel. The woman I once was is gone, and that’s that. I had to figure out who I was with the illness, with the pain. I’m still figuring that out. I know I’m going to have to make my husband push me in an off-road wheelchair all over that volcano when we go back to Hawai’i. I’m certainly much more cynical than I ever was. I know I want to help people now much more than I ever did. I want more than anything to inspire someone. I still feel like giving up sometimes, but I am inspired everyday to be a great wife, a great friend, and a great mother. It’s just that my definition of those words has changed tremendously. Maybe it took getting sick to realize just how lucky I am. I think the key to finding the answer to most questions when you are facing permanent illness is change. Your definitions have to change, your expectations have to change, and you have to change, too.

Unfinished Pain

Look inside my eyes,

it’s where my demons hide.
The sharpest pain
From the sharpest knives 
My broken body
just wants to die.
I try to fight,
but I lose to myself 
every time. 
I try to pick my pieces up.
I tell them all 
that I am fine.
Behind my smile 
deep in my eyes 
hides all the pain 
I keep inside. 
I lost my body 
I lost my mind
I watch my life 
passing by
I’m not dead, 
but I’m not alive.

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