Begging Your Pardon, Please

My dear readers,

Please know I've not forgotten the line of thought upon which I was expounding. I have, however, been very ill with my genetic disease (TNF Receptor Associated Periodic [fever] Syndrome, or TRAPS). With that, I was finally able to get approval for an experimental, potential treatment option.

While there are no FDA approved treatments for TRAPS, there have been clinical trials done on various medications with varying success. Today, I received (yet another) medication at the University of Wisconsin Hospital Infusion Center here in Madison. This is a “last potential treatment option” for me, so please keep your fingers crossed that this one causes no adverse reactions – and that it has positive effects for my health.

With that, I must tell you I am exhausted by the day and, very likely, the treatment… As a “Spoonie”, I am temporarily out of spoons and am unable to finish my thoughts on “putting away” death and dying… I will, however, write as soon as I am up to it.

Thanks for your understanding and good mojo sent my way.

Namasté,

Rowan

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This… is Real. Meet my Grief.

I interrupt my ever-attempt at looking on the bright side of things for a Reality Check post. I am at a point where I just simply need to “spill my vent”.

This is not a post asking for pity. I'm asking for connection with other human beings. This is me, writing about a realization to which I've come. This is me being raw, open, and sharing what it's like to have finally reached the touchstone of overwhelming grief that has blossomed from tremendous loss.

Generally, I try not to talk about these things. I do so because I'm aware of the fact that nobody likes a whiner, and that hanging around folks who are depressed drags one down, and that's just not healthy. But then, I'm beginning to think not addressing these things also isn't healthy. The trouble is, my health is not good as it is… So it becomes very enigmatic to try and sort things out.

The above snapshot is a photo of my dad. I know a great many people say what I'm about to say, but I think the photo speaks 10,000 words, and thereby illuminates my stating that my Dad was the best Dad in the world. I sincerely mean that. He wasn't without fault, but he knew how to love, how to apologize, how to forgive, and how to teach. Those are just a few of his great points.

 

This is a photo of my uncle (the gent on the left) and most importantly, my Mum – and that's my Dad on the right. My Mum was camera shy, so finding photos of her are a rare treasure. However, once again I would share with you that, while many profess it, I fully believe my Mum was the greatest Mum in the world. Revisit my Dad's fine points, and you'll have a pretty good sketch of Mum, too.

Mum crossed over in autumn-time of 2011. I knew my Dad would never make it a year without her, and by Goddess, he didn't. Nine months after Mum died, my Dad was gone, too. Last August, Daddy was out for a motorcycle ride when he missed seeing a stop sign. He was headed due west, the sun in his eyes, and he just didn't see it. He was hit by a truck and instantly killed. (No, I do not believe it was suicide. Dad would never do such a thing. Seriously.)

I have no words to describe the total obliteration of my world when they died. Yes, perhaps I was too attached, too close (though we lived 60 miles apart, we spoke by phone every single day). They were my best friends, my cheerleaders, my ass-kickers (when needed), advice-givers (but only when asked)…. Family ALWAYS came first to Mum and Dad. ALWAYS.

My parents were anchor, buoy, and oar to my own stubborn rudder (for example, they really didn't like the idea of me becoming a paramedic – and definitely not a SAR team member [Search and Rescue] – they supported my career choice, but not without reminding me that they worried for my safety each day). But this tightly-woven relationship became even more treasured after I lost the ability to work due to a car accident that not only broke my back, but also triggered both fibromyalgia (something I once believed was a farce – I sure believe its truth NOW!) and, simultaneously, triggered the genetic disease that had been in remission for years – a genetic illness that wasn't even a known illness until I was a young adult. (So, to everyone else, I was just a “sickly kid”).

I wrote a post awhile ago that asked readers to discover themselves beyond their “job”, their career. I did so because I know how devastating it is to lose the ability to label yourself by the work that you do. It's nearly soul-shattering to come to the realization that you can no longer work to bring in income to support your family. Yes, Social Security helps… But it sure as hell doesn't make it any easier.

I feel so lost. I have a wonderful wife, but not even she can understand what it is to be chronically ill, unable to even tidy the house and run the Hoover each day. She cannot understand how I can sleep all night and still be so sick that some days, I need to sleep all day just so I can be awake with her and my daughter during the evenings. Sometimes, as wonderful as she is, she gets frustrated and angry, and she is entitled to become so. I get embarrassed and feel such shame. I grieve. I grieve the loss of the ability to do something so simple as even make supper.

I am lost in a sea of grief. This was Mother's Day #2 without Mum. This will be my first Father's Day without Dad. This August, it will be 10 long fucking years since the car accident that changed my life forever. Ten long years of not being able to support my family financially, not being able to keep up with the laundry, cleaning, cooking… the simple everyday things of life. I'm angry, and there's not a damn thing I can do about it. I'm awash with grief over all the loss.

There are so many days when I have to remind myself of the reasons I must stay in this mortal realm. I have a daughter and a son who need me, even though I'm pathetically sick most of the time. I have a wife who loves me and, yes, needs me.

I have dogs to keep me sane. I knit, I crochet, I sew, I paint – when I'm well enough to do so. I water my little patio garden and talk with the Spirits, the Ancestors, Goddess every day. But I cannot get through the grief. I once enjoyed being outgoing, energetic, running Mach-1 with my hair on fire. I enjoyed accomplishing things. Now…

You know, I used to think the worst thing in the world was mediocrity, and so I was a striver. I became first seed on varsity tennis for all four years of high school. I was first chair, first violin in our orchestra throughout high school, and started playing with a Symphony Orchestra when I was 17. I used my paid violin gigs to put me through the Paramedic program. And now? Now, a cervical spine injury and arthritis in my left hand keeps me from playing even for enjoyment. Now, just getting out of bed is a victory some days. Now, I think the worst thing in the world is unrealized potential.

I try to share with people the challenge of living the life of a Spoonie. I refer people to the brilliant and greatly appreciated website, http://www.butyoudontlooksick.com/ and tell them about the “Spoon Theory” (which can be found here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ ). But I feel lost. I am grief-stricken. And all the incense in the world, all the photos and mementos and candles lit within my Ancestor's Altar doesn't make me hear Mum and Dad any clearer. And none of it gets rid of the thoughts that implore me to consider moving on from the mortal realm.

I have the strength to remind myself, via reciting litany of people who need me to stay here, that I cannot quit. But between the pain, the fevers, the illness, the lack of ability to accomplish something… anything… The frustration I cause my wife, and sometimes having her be angry with my lack of accomplishment around the house (which I don't blame her for, but I really need understanding and I'm a human, you know? It hurts.) With the short-term memory loss I deal with, the word aphasia I've had since the accident….

(Word aphasia – what a freakin' trip… With word aphasia, I know the word I want to say in my mind… But a completely different word comes out. For example, “garage” has become the 'outside voice' term for refrigerator. For some reason, my mind knows that I might want to say the word “stove”, but the word “microwave” comes out instead.)

Having lost both Mum and Dad within a year's time… I'm undone. I'm frustrated, I grieve. I so deeply grieve… What else is there to say at the end of such a post? I'm not sure, so I'll just end with:

Thanks for letting me bend your virtual ears, dear readers.

 

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But You Don’t Look Ignorant!

“But you don’t LOOK sick!”

You will know that you’ve said this to someone with a chronic, disabling illness by the way they seem to wilt, much as any delicate and small plant or tender flower does when either parched or beaten down by intense wind and heat. Their shoulders, pinned back by nothing more than sheer willpower and buoyed by the balloons of feigned strength – also known as their lungs – will break free and slowly drop with an appearance of a spontaneous and simultaneous landslide. Often times, you can even have audible confirmation of your faux pas via a slow, tight discharge of air escaping the lungs of this person, either in the form of a sigh, a wheeze, or a slow-leak hissing sound. Where moments ago, there was a stunning display of an “I’m really trying to be positive, here” smile, the truer skim-milked, pale and thin lines of lips will seep through. On any given day, this can be accompanied by a sudden trembling of the mouth, the condensation that has collected in their eyes, their hands, which are now even more cold and clammy, or even throughout their entire body.

“But you don’t LOOK sick…”

What I’d really like to say in response is, “And you don’t look ignorant!” Instead, I yield to society’s etiquette and either thank them with raised eyebrows or simply change the subject, inquiring about their lives. Such is the plight of anyone who lives with a chronic, invisible and debilitating illness.

Sadly, because of their invisibility, the topic of how to interact in a sensitive fashion with those who suffer from these is often left undiscussed. While we teach our children to not stare at those with physical differences, we – even us adults – do not discuss appropriate means of communicating with those who have unseen disabilities. This is true for mental illnesses and include anything from auto-immune and auto-inflammatory diseases to genetic, cardiac and digestive chronic illnesses, to name a few.

In my own experience, having several chronic, invisible and debilitating diseases, I have gone from a once incredibly active and socially involved person with a demanding career in which I was very passionately involved to becoming – what feels like – nearly invisible, myself. Following a motor vehicle accident in which I sustained life-changing spinal and back injuries, I also developed fibromyalgia. (I walk now, most days, without a cane making even my back injuries invisible, though the pain is still very intense often). This accident also brought the reoccurance of a very rare genetic disease that had long been in remission. Formerly known as “Familial Hibernian Fever” (Hibernia being the more ancient name for the island we all know as Ireland). Today, those in the medical community, as well as the 1,000 or so people worldwide who suffer from this rare genetic disease, know it better as “Tumor Necrosis Factor Receptor Associated Periodic Syndrome” – or “TNF Receptor Associated Periodic Syndrome” – which neatly becomes the acronym, “TRAPS”. For the curious, a “rare” disease is defined as follows:

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

You can read more about rare diseases and their classification that deems them “rare” at the following website:

http://www.rarediseaseday.org/article/what-is-a-rare-disease

Also for the curious, here is some further information about TRAPS:
http://ghr.nlm.nih.gov/condition/tumor-necrosis-factor-receptor-associated-periodic-syndrome

Beyond being rare, and more to the point, it is an utterly invisible illness. People cannot tell by looking at me that I am running a wretched fever, often accompanied by severe abdominal and chest pain for which I require heavy doses of pain medication (which means I frequently cannot drive). Top off my feeling like I have the world’s most wretched abdominal flu with fibromyalgia that makes even my skin hurt and the softest poke of your finger on my upper arm to get my attention feel like you’ve speared me clean through to my humerus bone, and you begin to understand what weeks on end are like for me. By no means are my chronic, debilitating, invisible illnesses the only ones out there – hell, no! Not even close.

When Being Invisible Makes One… More Visible…

All too often, though, I become acutely aware of the fact my invisible illnesses paint me highly visible and often mark me as a target for meanness, stunning displays of ignorance, anger, subtle – and not so subtle – aggression and disdain.

On days that I make it out without the use of my cane, I often get angry looks – or worse. Due to the fact that I have chronic illnesses that affect my cardiovascular and respiratory systems, (not to mention the chronic, debilitating pain that comes with these), I have a disabled parking placard. I encounter people’s thoughtlessness when they leave their shopping carts in handicapped parking stalls or the yellow striped areas surrounding them. I’ve had to choose other parking stalls when people have slipped their vehicles into the same yellow-striped zones while noting they’re not “technically” in a handicapped space. I’ve been yelled at, called names, had fists shaken at me, and have even had someone race their car at me, slamming on their brakes when I scurried out of their path. “Faker” was the label that was belligerently belched from the noxious mouth of the driver, yelled out his window.

A note to the world’s human citizenry: NOT ALL DISABILITIES ARE VISIBLE!

According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.

Citation: Disabled World News – Information on invisible disabilities including a list of hidden disabilities with physical and mental impairments: http://www.disabled-world.com/disability/types/invisible/#ixzz2P9uaZfXT

MS, cardiac problems (whether congenital or not), Syringomyelia (cysts on one’s spinal cord), and more are invisible, debilitating, and worthy of your understanding.

People tend to look at those of us with invisible illnesses as if we simply need to get their act together. We are the recipients of the, “If only’s”… If only you’d exercise more… If only you’d try this diet… If only you’d act like everyone else who is tired or dealing with pain…

A stunning differentiation is made here: People with visible illnesses or disabilities are often discounted, treated as if they cannot do for themselves or others. Conversely, people with invisible illnesses are told that they are “lucky” to get to nap each day, “lucky” to not have to work, and are told, either verbally or through actions, that they need to stop being treated with “kid gloves”.

It’s true. Unless traveling, I don’t need a wheelchair. On “good days”, I don’t need a cane. I’m not blind, so I don’t have a white cane with a red tip. But I am chronically ill with debilitating diseases. I do not seek your pity. I seek your empathy and appreciate a desire and willingness to forge a bridge of understanding where once there was none. I would daresay this is true for any of us who deal with these types of illnesses.

Put away your self-assured judgement of those who do not appear “deserving” of that handicapped placard. Leave your assumptions by the exit when meeting with someone who has been notably absent from gatherings where normally you would see them. Instead, foster your gracefulness and tactful desire to connect with these people by simply asking questions. Often, that’s all we need… Just a simple, “Can I take that cart back into the grocery store for you?” can create an opportunity to learn something, to connect with that person who hasn’t been able to leave their bed, never mind their home, for such a short period of time!

And with this, you will have not only touched someone, but also blessed them… All just by the simple act of belief… Belief in their plight, belief that the doctors and others know more than you do about the person and their illnesses when issuing that handicapped placard, but above all, by believing in THEM.