Grounding Lines

I needed to release a lot of negative emotional energy today. All the terrible violent and racist activity that’s been going on in America since last Friday has put me on edge. In the past, I might have gone for a long run but running is not an option for me because of my illness and unceasing chronic pain. Instead I opened my sketchbook and started drawing lines. I drew lines until my mind started to clear. I kept drawing them until I felt grounded again.

If I’m being honest, I’ve been on edge for quite some time. It’s hard hearing someone, like the President of America, who holds such significant power, saying things that are divisive and so far from disavowing groups rooted in hate and racism. As all of this persists, I have to believe the people who don’t hold his opinions outnumber him. I also have to believe, people whose values are built on the basic premise that all human beings are equal will prevail.

 

Shopping While Housebound: A Joe Fresh Security Concern

I’ve been housebound for four years now. The pain I feel daily – every minute of every day to be exact – makes it difficult for me to go out to do the many things I once took for granted. I remember going for leisurely walks on cool fall days as the leaves on branches overhead cycled through a palette of beautiful autumn colours before gently floating to rest on the ground. I remember walking to my local ice cream store to sate my summer craving for a large cone filled with my favourite flavour(s) then slowly strolling along the sidewalk toward home as I savoured each moment before they melted away.

Shopping was never something I loved to do. However, in recent years, even before my illness, online shopping became my go-to method for buying the things I wanted; and since becoming ill, I rely heavily on this method of shopping to buy everything I need from groceries to cleaning supplies to clothes. For the most part, I’ve been able to rely on one online store to buy casual clothing I need for my now housebound lifestyle and gifts I need to buy for friends and family members or their children. Their clothing hits a price-point that doesn’t hurt my wallet too much, my size is usually available, and my orders usually arrive within a few days.

Sadly, they have fallen from my favour. A few weeks ago, I ordered some items from their summer sale because they were greatly discounted and because I needed to buy some presents. I made my purchases in two separate orders because they had back-to-back promotions offering extra discounts. When the first package arrived the contents smelled. All the clothing smelled as if the company stored them in a space that contained chemicals of some sort and rotting food. I tried to ignore the smell and laid the clothes out hoping that airing them out would eliminate the odor – it did not. When the next package arrived it smelled even fouler than the first. This meant I would have to wash or dry clean these clothes before gifting or wearing them.

As a courtesy – and out of curiosity – I contacted the company to report the issue and to find out if something had changed in their logistics process. Did they change their manufacturer? Were they storing their product in a new storage space before shipping them out to customers? Had any other customer(s) contacted them with the same concerns? The representative who took my call told me the foul smell was a known issue the company was working to resolve. He put me on a brief hold while he looked for a memo that outlined the company’s policy for addressing this issue if/when customers called. He told me the memo instructed that customers were to be refunded the total dollar value of the order placed online; and none of the items in the order had to be returned. That surprised me; and I asked him multiple times to confirm that I would not have to return anything to receive the full refund, which he did.

Well, over the last few days, that policy took an abrupt reversal. On the weekend, the company’s representative left a message telling me that the first order had been fully refunded. Then he stated that the second order, that was a higher dollar value, could not be refunded, “for security reasons”, unless I returned the entire order. Then I would receive a voucher card for a 30% discount on a future order. Huh?! There was no mention of replacing what I had purchased. I called the company back on Sunday to speak with a supervisor who told me she needed to review the memo on the issue and she would get back to me with clarification. She called me back on Monday with more backpedaling about issuing the refund.

 

She reiterated that I had to return the order to get my promised refund. What about the fact that I chose each item for a specific purpose or person and most were already washed, gifted, and/or no longer in stock from their online store? She said they would do their best to replace them. She asked how many pieces of what I ordered were still in my possession. I couldn’t see why that mattered. She then added a new reason I had to return the order: They wanted to test the clothing to figure out the cause of the foul smell. What?! If it was a known issue couldn’t the company do those tests without the clothes from my order? I asked if they had required other customers who reported the smell to return their orders. She wasn’t sure but assumed they probably had, which made no sense because they refunded my first order without any items returned. I asked again, why I was told that the memo related to the issue stated customers didn’t have to return anything to receive the refund. She wasn’t sure. I asked why the previous representative told me the dollar value of my order posed a security concern. She apologized for his poor choice of words and said that was not a valid reason.

After 25 minutes of this back and forth, we reached an impasse. The promise of a full refund from the first representative I spoke with was not going to be honoured for this order, without returning the items I purchased; and I could not continue to be a customer of a company that breaks its own policies and promises. The e-commerce universe is vast and Joe Fresh is not the only company that offers what I need. I chose them because they are a Canadian company and shopping with them was convenient. They are willing to discard me as a customer because they have so many that my business is insignificant. Joe Fresh labelled me a security risk after offering me a refund I didn’t seek out. Yet, the value of the order never raised any cause for concerns when I placed it.

 

The Pill Box

Every week, either late Saturday night or at early light Sunday morning, I go through the ritual of filling my pillbox with my medications. My pillbox has 28 compartments. Each gets filled with a varying number of medications in the form of pills or capsules. On average, I take a combination of about 32 pills and capsules each day. However, the 32 pills and capsules don’t account for all the medications I take daily because I have others that come in different forms i.e. liquids, inhalers, and – on the odd occasion when my gastrointestinal system protests against ingesting certain types of oral pharmaceuticals – suppositories. Early on in my illness, I was even prescribed a topical anesthetic for pain that came in patch-form, but it did little to reach the source of the pain deep in my pelvis.

The largest part of the pills and capsules that fill each pillbox compartment are medications I take to manage my pain. They aren’t all opioids/narcotics, but the majority of what’s in the compartments usually is. Unfortunately, not all these medications always do what they are prescribed to do. Therefore, over the last four years there have been many changes made to my medications. Changes in doses are usually an increase in strengths – as petite as I am I seem to need large doses to manage my pain –, but I’ve learned that dose increases doesn’t have to mean an increase in quantity. Some medications have also been swapped for others of equal strength when they have caused unexpected side effects or delivered no benefit at all after weeks and in some cases, months of hoping for some relief with them; and occasionally new medications get added to the mix in an effort to boost the benefits of what works.

The Pill Box – 1

The Pill Box – 2

Sometimes, the number of pills and capsules I take might fluctuate from day-to-day. That fluctuation depends on whether my doctor(s) writes prescriptions for medications with a minimum and maximum dose. Because my pain medications are largely opioids/narcotics, I try – not always successfully – to take the lower end of a prescribed dose when possible to manage my pain. My Pain Specialist prescribes my primary pain medication in two forms. The first is a long-acting opioid/narcotic prescribed to be taken multiple times each day that is intended to manage my pain for a scheduled period. The second is a breakthrough or ‘rescue’ dose of that same opioid/narcotic that I take in between the long-acting doses; especially in times when my pain levels are high, which is most of the time. I try to take that breakthrough medication on the lower end of the prescribed dose(s), when I’m having a good day, which is rare; or if I’m lucky enough to sleep through the night the overnight breakthrough dose gets skipped.

The main point of having a pillbox is to make sure I don’t miss scheduled medication doses because I take so many throughout the day. Unbelievably, I’m not always successful and might miss a dose of something from time to time, whether it’s because I get distracted or I’m fortunate enough to get some restful sleep. Nonetheless, the brightly coloured compartments of the pillbox that I fill with brightly coloured pills and capsules is my constant companion and may remain so as long as I need a reminder to take 32 pills and capsules – give or take a few – each day.

If you don’t have a pillbox, how do you remember to take your daily doses of multiple medications?

 

Horrible Boss Flashback

It never goes away, does it? The involuntary visceral constriction when someone reminds you of a terrible episode in your life. Did the person with whom you imagined yourself building a life break your heart or did you break theirs? Did someone you loved dearly suddenly permanently pass from your life? Did a trusted friend unforgivably betray you? Did you have employers who inappropriately inserted themselves into your personal life? I’ve experienced these situations, and more, that have sometimes made life more difficult than one wishes it to be. However, the incident of which I was recently reminded was the inappropriate treading into my life, which my last employer felt they had the right to do.

I ran into someone recently, whom I had the pleasure of working with on a project for a short time, not long before I became ill almost four years ago. Lucky for her, she did not have to bear the same degree of pain, humiliation, and strife I did to cut ties with our former horrible boss. Hearing the name of the company where we used to work made me cringe. Since the end the legal action I had to take against the company, I’ve done all I can to limit contact with anyone who worked there so I can maintain my peace of mind. Especially those former colleagues who blindly supported my former horrible boss without knowing the truth about what I was subjected to.

My former horrible boss tried to deny me access to my disability benefits when it became clear that I couldn’t return to work after my hospitalization at the onset of my illness. She demanded answers to embarrassingly inappropriate questions about my health. She later terminated the part of my extended health benefits that paid for the many expensive medications I take to function daily; and even worse, she terminated my employment without notifying me about a year into my illness in an attempt to strip me of my long-term disability benefits. On top of all that, she launched a campaign of misinformation within the company to explain my sudden then extended absence. The stress of trying to cope with all of this and my poor health and constant pain was, at times, too much to bear.

The person I ran into knew the crux of the situation because she had heard details from a mutual friend. She expressed her sympathies that someone, anyone, could have done any of what our former horrible boss did to me; especially because the early period of my illness was when my doctors had no conclusive answers about what was happening to my body and I was truly fearful for my life. Instead of being able to direct my focus on my health alone, I was forced to cope with the added stress of an employer who felt they could insert themselves into the most intimate parts of my life. When I refused to share what was happening to me, in part because I truly didn’t know, but mainly because it’s against the law for an employer to ask. It set in motion the series of events I listed above – and much more I try never to think of – that I still sometimes can’t believe. The right to protect my health and personal information caused a protracted legal case that thankfully vindicated me and ended my former horrible boss’s persistently violent prying into my life.

Even though all of that happened, the best thing about this flashback, about any flashback, is that it’s no longer part of one’s current reality. It may be difficult to be transported back to a particular moment when something devastating happened, however, that living moment is gone. Better still, I know I have the protection of the law and the emotional and psychological tools to bolster me if ever the smallest thoughts of that situation resurface in my life, and if any do, I don’t have to stay with them or delve beyond the surface of those memories unless I choose to do so. In this case, where anything involving my former horrible boss is concerned, I choose not to delve deeper than necessary to describe how she attempted to intimidate and deprive me of what I needed to care for myself. I choose not to allow who she was, and probably still is, affect me beyond a momentary tremor in my subconscious because I survived and beat her attempts to harm me during a time when I had to dig deep just to keep living.

 

The Difficulty Of Being Loved

FACT: When we are loved, it’s not always easy to accept it and take in the full meaning of it.

The difficulty of it lies in trusting the realness of receiving something immeasurable without any expectation of having to give a single thing in return. It’s especially difficult when we have lived lives where we survived abuses and/or significant traumas where love and tenderness were withheld to increase suffering. How can a person trust a reality where things are given without a price or obligation attached, when one’s whole existence screams that it isn’t possible to have that, to be worthy of that, or deserving of another human being who regards your being with tenderness and care?

I’m a witness to this struggle now. I’m seeing this unfold in the life of one of my friends and the mental health toll is enormous. My friend’s partner is in the midst of a major health battle and seems incapable of accepting, or acknowledging, how deeply they are loved and cared for by so many people. This person could be told every hour on the hour that they are loved and they still might never believe it. The exhaustive effort invested in repeated attempts to show love in tangible ways with the gifting of things, through deliberate actions, physical emotional comforts, and just being there are all dismissed as insufficient or outright meaningless; which makes the giver, in return, feel unloved.

Being on the receiving end of this dismissal may be a deeper pain than never being loved. Watching someone I love live through something like this makes me feel helpless. There isn’t enough I can do or say to make this situation better. I can be supportive. I can tell my friend kind words or make suggestions about how to cope. However, I know my actions and words only salve the pain during the moments when we interact. When those moments end, my friend is the one who returns to living this difficult reality. A reality that – if I’m reading things correctly – is not going to end well, no matter how much I hope for an alternate result.

As this situation unfolds, it’s getting harder for me to understand why people make living the lives we have so much harder than they must be. Why do we treat each other so harshly? And why, when we are most in need of it, do we reject the kindness and love of those closest to us?

 

Bonnie Raitt – I Can’t Make You Love Me

 

Conflicted Canadian On Canada Day

Today marks 150 years in the millennia that the land we call Canada has existed. It is the 150th year; I am told is most significant, because this is the anniversary of when this land became a sovereign nation under the rule of a government formed to manage, then control, the land and all the people and resources that inhabited it since time immemorial. It is the anniversary of the sliver of time marked first by exploration and curiosity of what lay beyond horizons; then scarred by the efforts of all that has been done to erase the pre-historic presence that welcomed the adventurous spirit of strangers to share in all that could be seen before them.

Today is the day that marks the efforts of erasure, which continue even in the choosing of an arbitrary number representing a blink of an eye in the vast time that this land and its people have stood strong. I have benefitted from all the efforts of erasure to live in a country where I have freedoms, privileges, and opportunities not always available to the people indigenous to this land. People whose history cannot be contained by the 150 years of celebrated oppression, violence, and ignorance of what existed before and continues to thrive even under endless attempts to snuff it out. I benefit from the stereotypes that paint the Indigenous Peoples of this land as undeserving and incapable children requiring constant surveillance and micromanagement as the boundless wisdom they hold is ignored and this land faces the same plight to which we have sentenced them.

While I and others are free to live life, wherever and however we choose within this young nation, the Indigenous Peoples of this land to whom the number 150 marks only a brief moment in their history, remain relegated to pockets of land reserved for their kind. Where their status as non-relevant bodies in the vast time and geography of this land is perpetuated by restrictive rule of laws. When that status was deemed insufficient to contain the internal savages of nations within this celebrated nation, it was paired with re-education to break the spirits we now know are strong and eternally bonded to the land.

How can I celebrate today? How can I celebrate only this selected 150 years of the history of this land? How can I celebrate a country that describes itself as multicultural and calls itself a mosaic, when its Indigenous Peoples and many of the peoples that came after them are not treated as equal or worthy as those who have arbitrarily plucked this number from the timeline?

 

Canadian Native Flag designed by Kwakwaka’wakw artist Curtis Wilson

Sleep: The Unconscious Way to Cope With Pain

Have you ever had such intense pain, physical, or other, that all you could do to cope with it is sleep?

I’ve slept for the better part of the last 2 days. I had to attend a family event on Sunday afternoon. When I say “had to” I don’t mean forced to, I mean I would have felt horrible – worse than the pain I’ve had since – if I hadn’t attended because it was in honour of one of my favourite aunts who does whatever she can for everyone. However, between the drive to the home of my uncle who hosted, moving around to interact with all the family members and family friends; and then the drive home, my body had to go into near shutdown so I could cope with the resulting pain flare up.

By the time I arrived home around 11:00 PM on Sunday night, I knew I was in for a rough few days; not to mention my experience dictates that it takes at the very least two days for me to recover after going out to do anything. Upon arriving at my uncle’s house in the afternoon, my pain level was already climbing; and on the drive home, the soreness in my legs had already become unbearably intense. When my feet touched the ground as I got out of the car, it was definite that I would not escape the punishment for daring to enjoy life just a little bit while celebrating the life of someone I love. After shutting the door to my home behind me, I made a beeline for my bedroom to change into cozy pajamas then I went into the bathroom to perform the nightly rituals of brushing my teeth and putting my hair up so I don’t wake up with an equally painful tangled mess of hair to deal with.

I was in bed by midnight. It took some time to fall asleep because I was so uncomfortable with the pain building throughout my body. I vaguely remember waking a few times during the night, but I know I was too exhausted to awaken fully to take my overnight breakthrough dose of pain medications. I even slept late and missed taking my first large dose of pain medications on time at 6:00 AM. However, being late this one morning didn’t matter much because being asleep kept me unaware of the pain. The rest of Monday was spent in a groggy haze of pain medications and sleep, but I didn’t miss much because it poured rain most of the day and the grey sky outside was not at all appealing.

I woke up around 4:00 PM because my phone rang. It was my therapist calling me. I called him on Saturday shortly after coming out of my panic attack so he was responding to my message. I knew he wasn’t in the office during the weekend, but I felt that I had to talk to him as soon as it was possible to sort through why the panic attack might have happened. As usual, he helped me sort through the still lingering feelings and to realize how everything I’m coping with – including the current pain flare up – and all that I’ve lived through in my life are so deeply connected, it makes a panic attack a reasonable thing for me – or anyone dealing with so much – to experience. He also gave me some practical tips on how to cope if I have another episode: splash my face with cold water, put cold water/a wet cloth on the back of my neck, breathe into a paper bag, lay on the floor so I feel grounded, and connect visually with objects around me so I can know what’s real. I was grateful for that conversation and the clarity it brought.

I stayed awake for a few hours after that conversation. My friend R called for one of our weekly chats. Then I tried to make sense of the horrible news of the day and deciding what my stomach could tolerate so I could make a meal. I failed at both and fell back to sleep on my couch. I managed to wake up a few hours later to take my last large dose of pain medications and I might have stayed awake for about an hour or two. The next thing I became aware of was that for a second morning in a row my body opted to sleep as late as it could handle before waking to take my morning dose of pain and other medications. After doing that, I still had the need for two morning naps.

I also realize, sometimes I have to accept that it’s not always conscious methods that are best for coping with my pain.

 

The Beatles – Golden Slumbers/Carry That Weight/The End