Creative Pain Distractions

It’s hard being alone with intense pain late at night, as I was last night and the night before. Then again, pain that never stops is hard to cope with at any time of the day. Last night, and other days and nights, when my pain is particularly bad and sleep eludes me, I try to think of things to do – aside from amputating the offending body part(s) – to distract myself. Unfortunately, depending on the pain’s level of intensity, I’m not always successful at turning my thoughts away. However, I do usually end up creating something interesting to look at.

As the pain level rose in my legs and pelvis the night before last, I didn’t have a plan for what I wanted to create. I started to place random dots on a clean page in my sketchbook with a black Sharpie pen. Then I connected the dots together with short straight lines and they became triangles, but the sight of a page full of small triangles didn’t feel satisfying. That led me to connecting the triangles at their various points creating a sort of web, which still felt incomplete. I looked at the page for a short while then started drawing lines within each triangle transforming them into prisms. With each line I added, I saw multi-pointed stars appearing on the page that made me wish for an opportunity to experience weightlessness among them on the off-chance I might not feel any pain without the pull of gravity…

Drawing lines didn’t help make my pain go away on recent nights, but it distracted me from thinking of it for a short time as I imagined creating a new galaxy of endless stars.

 

When Someone Shows You Who They Are…

“I don’t trust you,” she said coldly. The same person I recently held in my arms while she cried and told me her troubles said those words to me.

I’m never going to forget being told those words because I have the kind of memory that stores information with great detail and rarely dislodges any of it. My earliest memories were created when I was a toddler and I still see the things, people and places in them as if I interacted with them yesterday – much like I can see this person on the playground of our elementary school. Sometimes I wish my memory didn’t work this way but at other times, now for instance, I’m glad I rarely ever forget. I’m glad because it ensures that I won’t allow myself to be caught in another web of deceit like the one made by a person who chose to abuse my friendship and trust.

As an adult, I’ve been accused many times of being naïve and too trusting of people, especially those I allow into private areas of my life, and with whom I share the most intimate parts of who I am. That characterization may not be too far off, but I prefer to look at it from the perspective of trusting until I’m given a reason not to trust. I approach life that way because it takes too much energy to walk around suspecting that every person one engages with is going to harm you in some way. The never-ending hypervigilance and suspicion would surely make it impossible to enjoy one’s life, and could, quite possibly drain you of your will to live.

Besides, when someone betrays or deliberately hurts you, it’s the unmasking of who they are. Therefore, it has no bearing on your character. Furthermore, when that same person has the audacity to mockingly ask, “What are you going to do about it?” in relation to the action they have taken against you; or “Who do you think you are?” after you call her or him out on their vile behaviour; it’s further evidence that they were never worthy of your friendship. Words and behaviour like this also makes one realize that the air of toughness someone might have projected for years, is just the lack of a conscience and the inability for her or him to form genuine human connections.

In the end, one must decide what bearing such a betrayal is likely to have on any kind of relationship continuing to exist. In my experience, that chance arcs sharply towards zero, because in all likelihood, there may be nothing to salvage. After all, it would be more than naïve to allow any person who treats you so poorly to get that close to you again. And if there’s any doubt about this decision there are always these wise words from Maya Angelou to remember, “When someone shows you who they are believe them; the first time.”

When Someone Shows You Who They Are

 

Prepared to Pluck Polyps

After some juggling of schedules, I’m finally having surgery today because last Spring the results from my follow-up abdominal ultrasound scan showed that I have a uterine/endometrial polyp. My Gynecologist decided it was best to remove it, and not leave it alone and subject me to abdominal scans every six months to monitor it for changes. If I had demanded he leave it alone – say because I feared extreme post-surgery pain – any changes that showed up in later scans could have signalled cancer. Even the slimmest chance of that happening was enough for me to accept my Gynecologist’s decision.

To be honest, I expected to have the surgery in the fall, but I had to place a priority on the treatments and programs I already had scheduled for my chronic pain during those months. My continued pain was also a big part of the focus for my surgery pre-admission appointment last week. I spent about four hours in the hospital’s Pre-Admission Center on Friday, meeting with nurses, technicians, and doctors to discuss my medical history and identify any current health issues, have blood drawn for tests, and get a general physical. The nurse was the first person I met with and at one point, while looking through my electronic medical files; she rightly stated that I spend too much time in hospitals.

During my meeting with the nurse, I had to recount the history of my illness, the outcome of my last surgery and recent treatments, and the long list of medications I now take to cope with my pain. As pleasant as she was, while I sat there and went through all those details, the interaction put a sharper edge on the pain I was feeling. At one point, she noticed my creased forehead and asked if I was all right. There wasn’t much I could say in response, except that it was just my usual pain, which thankfully she couldn’t tell was a lie. Before I moved on to the next stop in the pre-admission process, she gave me some literature on my surgery, a Hysteroscopy, and although I’ll be under general anesthesia, will not require any abdominal incision(s) because it will take place entirely within my uterus. Oh, joy!

Next, I met with the blood technician who took three or four vials of blood. I’m rarely sure about how many vials get filled for blood tests because having my veins pierced by the needle always hurts like hell and I never look. I am concerned about what the results from the blood tests might be because recent tests have uncovered that I have low iron – which means I’m anemic – and I have low blood (hemoglobin) levels. If I have below normal blood levels again, my surgery might be rescheduled until I get a boost. Thankfully, when I later met with the doctor for my physical, the session was short and didn’t cause me any extra pain.

My last stop, in the pre-admission process was with and Anesthesiologist, who is a member of the hospital’s Pain Team. I had to meet with someone from the Pain Team to discuss the possible outcomes of the surgery with respect to my pain. The type of surgery I’m having is usually a Day/Ambulatory Surgery procedure, meaning that you get to go home once you wake up and don’t show any adverse reactions to the anesthetics. In my case, the chronic pain I live with daily is factored into when I might be allowed to go home. If, when I wake up, I don’t have unmanageable pain I can go home on the same day. However, if my pain can’t be controlled I’ll be kept, at least overnight, until my pain reaches a level I can cope with at home. I’m hoping for the former because I want to come home and sleep in my bed after it’s all over, but knowing what I do now about my pain’s unpredictability I have to prepare for anything.

This is what I was listening to as I posted this morning…

The Beatles – Hey Jude

Mood Soothing Blooms

Yesterday I was having a tough day, with respect to pain and mood. Of course, in my case, one feeds the other and sends me into a downward spiral of agony. The day had started reasonably well – even though I hadn’t slept much the night before – then an abrupt about-face came because I was angered by something someone said to me. I know that becoming angry doesn’t work in my favour – it never has –, but controlling one’s temper isn’t always the easiest thing to do.

With the hope that it might pull me out of my prickly mood, I practiced a guided iRest meditation, but my mind kept skipping out to engage with other thoughts and memories. I had, however, committed at the beginning of the meditation to accept whatever might show up during my practice so I didn’t stop before the end of the recording. When it finished I was grateful that I worked through it because, as I usually do, I felt sleepy. I was able to fall off to sleep for about an hour until my slumber was interrupted; first by a phone call from my pharmacy and then immediately after hanging up, by a heavy knock at my door.

My annoyance was elevated again because the short sleep hadn’t helped to reduce my pain, so walking to my front door was more than uncomfortable. I was further annoyed when the person hammering my door refused to identify himself until I opened it. When I did open the door, he asked me my name from behind what appeared to be a box overflowing with shocking pink and white tissue paper that he handed to me. Because I was still somewhat foggy with sleep, I almost lost my balance when the weight of the box shifted to my hands. When I shut the door, I was a bit confused by what had just happened because I wasn’t expecting any deliveries.

Mood Soothing Blooms

The overstuffed box of tissue paper turned out to be a beautiful bouquet of a dozen assorted roses. The timing of their arrival couldn’t have been planned more accurately. I knew who sent them as soon as I ripped off the paper and saw each beautiful bright bloom and I was so grateful they arrived when they did. The flowers lifted my mood and proved to be a welcome gift of distraction from what I was feeling physically and emotionally. I know they were meant to be a Valentine’s Day gift, but they delivered a more meaningful message by arriving a day early. They remind me that even though others might engage in negative behaviours, which I sometimes allow to affect me too deeply, there are always those who love and value me for who I am.

Thank you B!

 

Blogiversary: 2 Years & 200 Posts

I received two unexpected notifications this week from the WordPress staff. I’ve been writing in this space for two years and I’ve written 200 posts. When I started this blog, I did it with the aim of unburdening myself of all the stress and emotional and psychological pain my illness causes me. I needed a space separate from the judgement and input of my family and friends. A space where I could be completely honest about what I am living with, while hoping to connect with other people who could empathize and truly understand what I’m living with. I’ve gotten that and so much more from this small corner of the interwebs that I’ve turned into my own.

This past year I started sharing my writing with some of my friends and family. I did that because they still have a hard time wrapping their heads around what is happening to me and how I cope with this illness every day. I hadn’t shared my writings about my illness with them before because I was anxious about exposing myself and the raw truth of my experiences and emotions; and I worried that I might have to become less candid with what I write. However, the feedback I received from some of them made me realize that I had no reason to fear what they might think.

In fact, my anxiety was unwarranted. The friends and family, with whom I shared my writing, were all incredibly compassionate. Some expressed disbelief that I’ve managed to hold myself together all this time while living with the level of pain I do daily. They couldn’t understand how I manage to maintain such an upbeat outlook even with the many failed procedures and pain medications that often don’t manage my pain as they should. Others just enjoyed reading my writing and were surprised with the level of detail I retain about my experiences and how vividly I convey what is happening to me.

This made me feel closer to them, which was completely unexpected. I never thought it could be possible to appreciate and love them more – let alone feel closer to them. Because of this, when I sit down to write I don’t worry anymore. I don’t feel the need to consider that I might express something that may be upsetting to them because they have made it clear that the support they extend to me and the love they hold for me is not conditional on what I might need to vent. They see this space as an opportunity to tap into the truth I might not fully share otherwise.

Two years into writing this blog and almost four years into living with my illness, I continue to learn about the people in my life and myself. Obviously, I don’t know what to expect in the coming year. My hope is to continue with the same determination to cope with my illness and to share what I’m living through with others who might connect with something I post. Writing has always been an important part of my life and even though I started this blog on a whim, it’s become an invaluable tool to help me – and now people I’m close to – cope with and better understand my life.

Blogiversary Bouquet

 

Surgical Scar Struggles

I started writing this post in early September of last fall, after taking a long look at the 11-centimeter (just over four inches) surgical scar that starts at the bottom of my belly button and makes its way down my lower abdomen on to my pelvis. When I started writing it, I was feeling optimistic because it was starting to shrink and fade, but my mood shifted as I started to think about it being a lifelong reminder of what I continue to live through. I forgot that I had started writing it until recently when I read a post on Nursing Notions site titled ‘Not Yet Defeated’ about her experience with surgery and healing.

As I wrote last September, it hit me that my scar is more than a thick, raised, itchy, line in my skin that will never completely disappear. It is a constant reminder of so much. This vertical line is evidence of the most significant attempt to resolve the suspected cause of my chronic abdominal pain and the pain that grew from it and now radiates down my legs, out into my hips, and up my back. It is a reminder that a surgical team led by one of the most skilled surgeons in my city sliced through layers of my skin, fat and muscle that protected my abdominal organs to explore the space cradled by my pelvic bones to find the growth that shouldn’t have been there and remove it. My fading surgical scar will always remind me that although the surgery wasn’t as invasive as expected and the growth was cut out, it failed to get rid of my pain.

That may be the worst thing about having to look at my scar each time I undress or every time I touch it to scratch the itch: I remember the failure. The itch tells me the scar is healing, still shrinking, while my pain remains the same. Eighteen months after my surgery, regardless of how liberally I massage rich moisturizers into my skin, the itch won’t go away. Before the creation of my scar, I had already been through so much. Now, while it sits so prominently on my lower abdomen, I continue to live with the pain and more failed treatments. I thought that was more than enough. That was until I started planning a trip where I’ll have a chance to submerge my body in saltwater then allow myself to float to the surface towards warm rays of sunshine. Then, for a moment, I felt something unexpected…

Apart from my doctors, some family members, and a few close friends, I’ve taken comfort in not having to show my scar to anyone. The thought of having anyone stare at my scar is unsettling, and I’m not ready to have it become a conversation piece. When I pulled out my swimsuit bottoms recently I unexpectedly felt overwhelmed with self-consciousness. I’m no exhibitionist but I’ve always worn fairly conservative two-piece swimsuits because a one piece/maillot reminds me of high school gym classes. This means that to enjoy the water the way I’m looking forward to I need new swimwear because everything I own puts my once scar-free abdomen on display.

After anxiously searching online for hours, I finally found bottoms that cover my abdomen all the way up to my belly button completely hiding my scar. I know that in the grand scheme of all I’m living with this probably sounds vain and superficial, and it shouldn’t be a big deal. However, it’s a big deal to me because it’s another thing, more change, for me to adjust to. My life changed the day my pain started, it changed after each inconclusive test and invasive procedure to get to a diagnosis, it changed again with the first slice of the scalpel into my flesh and each stitch to close me up, and it continues to change with each failed treatment and every handful of pain medications I swallow daily.

My scar will always be with me as a symbol of what I have to live with because of my illness. My frustration is not knowing when or how deeply, coming into awareness of more changes will affect me in the future. However, I must believe I can find ways to live with it all: this time it’s in the form of spandex and nylon swimsuit bottoms. And I’ll do whatever I can to adjust to the next change when it arrives.

New Swimsuit Bottoms

iRest: Groundless Ground

During the iRest program I participated in last November, I spoke with the doctor who facilitates the program about a memory from my childhood that surfaced. I quite vividly remembered a day when I was walking home from school – I’m guessing I was in eighth grade – when I suddenly felt a sensation that might be characterized as an out-of-body experience. I felt as if I wasn’t physically connected to the ground beneath me. I didn’t feel completely connected to my body either, but I could sense and see everything around me it was as if I was simply witnessing what was happening through my eyes. I felt that at any moment, I might float away but, because gravity was doing its job, I wouldn’t go flying off the planet.

I know it sounds strange and I can’t remember having that experience at any other time in my life: the awareness of not actually walking down the street in my body. The iRest program was probably the first time I thought I wouldn’t be considered odd if I shared it, mainly because we talked about the abstract concept of a person’s essence and being, rather than the soul. When I described this memory to the doctor, she told me there is a name for what I experienced. It relates in psychological terms to our consciousness and metaphysically to our essence or being. The experience is known as the ‘groundless ground’, which may even be likened to the ‘witness state’ in meditation. It was a great relief to have a frame of reference for the memory of an experience that felt so strange.

As we discussed it further, the doctor explained more about the metaphysical concepts of ‘essence’ and ‘being’ and asked me to spend some time thinking of what about me, my being, has been consistent throughout my life. Of course, the one thing that surfaced was writing, more specifically writing poetry. Writing poetry may be the one thing in my life that is never forced or analytical and has been part of me for more than half my life. It may be the only thing about myself I never question nor do I wonder why or where it comes from; and of course acquiring this new insight inspired me to write poetry.

Groundless Ground