Tuesday, July 28, 2015

To Define Or Not To Define

Post Soundtrack:  Don't You Know by Gramatik

I read an article on The Mighty​ today written by a mother about her son.  There is a quote from her article that I have adapted to fit myself.

"My disability is defining.  It is not a side note.  It is not a post script.  In the story of my life, my Lupus will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterword.  It will be front and center, along with my strengths, my flaws, and my accomplishments."

In her article, she is discussing her son who has spina bifida.  She is arguing against the idea that disabilities should be downplayed in importance by how we talk about it.  I have heard before that I shouldn't let Lupus "define" me.  She asserts that such a huge thing clearly plays a large role in defining a person, and I agree.

If I try to separate myself from my Lupus, to only perceive myself aside from it, I will forever be trying to hold back the ocean with my hands.  It cannot be done.  It is a part of me, a part that will remain with me the rest of my days.  As depressing as that may sound, it is not evil unto itself.  It is not a curse.  It can be a blessing, it can be uplifting.  It is what I make of it, but it is still PART of me.  Irrevocably.

I am not saying that I am by any means proud of having this disease, or that I will flaunt it somehow as a badge of honor.  It is just something I must overcome, that I must learn from, just like someone with asthma or a bum knee.  It is a daily item to contend with, and it has changed how I view the world, and how the world views me.  That can't be swept under the rug, ignored, or treated like something I'm taking onto myself that I shouldn't.  I have every right to 'own' having Lupus.

I have seen an amazing amount of shame showered on Lupus patients who are struggling with their diagnosis... by other Lupus patients!  They are admonished not to let Lupus change them, or to not let it keep them from doing something, or other such things.  I'm sorry, but I'm not letting Lupus keep me from things I love... it simply is doing so whether I will it or not.  It's a fact of life with Lupus.  That doesn't mean I stop liking to do those things.  It just means I can't right now.  And I might not ever again.  But that hardly is letting Lupus "win".  Feeling upset over the disease is not letting Lupus "win" either.

I'm fine if others don't wish to define themselves by their disability or disease.  I get it.  It may be important for them to designate that separation between who they are and what they have.  For me, I need solidarity of myself, a harmony of who I am and what I am going through.  I have a son, so I am a mother.  That can be hard.  I have a husband, so I am a wife.  That can be hard too sometimes.  I have Lupus, so I am diseased.  That is hard, sometimes extremely hard, but that is no less true or identifiable as me than being a mother or wife.  The only difference is that I did not choose it.

So thank you to Mary Evelyn for giving me words that evaded me before.  Now I have a firmer sense of what I feel and mean when told not to let Lupus define me.  How I define myself is up to me and only me.  And I have Lupus.

Monday, July 20, 2015

A Caregiver's Confession

Post Soundtrack:  I'd Be Lying by Greg Laswell

Recently I wrote a post about my fears.  Afterwards I shared the six fears with my hsuband.  When he asked me why I was afraid of depression, I found I couldn't manage to summarize or read aloud what I had written.  It simply was too difficult and real for me to articulate.  I told him he'd just need to read it himself in order to understand.

What happened after he finished reading was entirely unexpected.

After giving me a big hug of comfort and understanding, he surprised me with a revelation.  He told me, "I understand, because those are my fears too."  I was floored.

"You fear the same things?" I asked in astonishment.  I knew I wasn't the only one with fears, but for him to tell me that he feared the same things was extremely enlightening.  Of course, his side of those fears were different than they were for me, but they still were the same things.

He was afraid of the first three for essentially all the same reason.  My dying, hospitals, and me dealing with lingering suffering all amounted to his gut-deep anxiety of watching me suffering.  He told me he doesn't like to see me hurt, and the idea of seeing me in such dire straits as those three things would involve would be one of his worst fears.  He is not an overly emotional man, but it was clear to me that this affected him strongly.  I know the lengths he would go to in order to prevent me from having to go through any of that, even if it meant he had to bear it himself.

That these things crossed his mind when he entered hospitals or ERs really touched me.  I have done my best to keep my uneasiness to myself, as clearly he has too.  We have occasion to visit folks in the local hospitals reasonably often, so this isn't a once-in-a-rare-while thing.  It definitely made me feel much less alone to realize he shared my trepidation when we go into one.

His fears concerning my medications are pretty much right in line with my own feelings about them.  He too is glad they help me, but is also afraid of side-effects, of them not working, and afraid of the unknown we face when something new is introduced.  Even if he isn't the one experiencing these things first-hand, he does have to deal with helping me through them.  He's always right there, walking beside me as I struggle with whatever is going on.  He knows.  He feels it too.  I can't tell you how much that helps.

He's always been worried about the possibility of having to leave me alone in the world, even before my health declined.  He's just that sort of loving, caring man.  But the thought of me struggling on by myself with my Lupus is almost more than he can bear.  We both pray dearly that nothing will take either of us away from this world, because neither option is at all bearable to think about.  We need each other.  It feels good to be valued that way, Lupus and all.

Last of all is depression.  I feel for him in this fear, because as hard as it must be to spiral into that darkness, it must be so much harder to watch one you love so dearly fall into unreachable darkness.  His fear here is painful to see, because the anticipated agony is so visible to me.  His worry is that I will slip beyond his ability to call back, that I will succumb to these fears and the despair that Lupus weighs on a person.  He is afraid of watching me move beyond the influence of his love.  We always work on problems together, and it would be wrenching to have something like depression remove that.  That is the crux of his fear concerning my becoming severely depressed.

As odd as it sounds, it comforted me greatly to hear him confess to these fears.  I've told him in the past that he shouldn't hide his worries from me, that knowing his fears help me not to feel so alone, as opposed to taxing my emotional strength.  This was a prime example of how true that is.  His opening up to me about his feelings and fears helped me to lean on him, and let him lean on me in return.  Together we'll muddle through.  Together we are stronger than trying to wrestle with these things alone.  I am so grateful and blessed to have him as my husband, my soulmate, and my biggest source of support, comfort, and love.

To all the caregivers out there, most especially the spouses, a deep and heartfelt thank you.

Tuesday, July 14, 2015

Fears Confessed

Post Soundtrack:  Ow by Stephan Moccio

I have wanted to work on this post (or series of posts) for some time.  Originally I intecded to title it as "Secret Fears" since they aren't things I prefer to discuss, even with my husband.  However, upon reflection, I realized that these are not likely to be so secret after all.  Some of them make a lot of sense, and perhaps others have had an easier time discussing them with their loved ones.  Either way, I'd like to list things I am very fearful of in relation to my Lupus, and explain how I feel about them and why, if possible.  So deep breath, here goes.

1.  Dying

This may seem like an obvious fear, for me it isn't about what you may first assume.  Yes, I'm afraid of dying.  Yes, I'd rather avoid it.  But that isn't my not-so-secret fear.  My fear here is of leaving my loved ones alone and bereft.  It would break my husband's heart to lose me, and would cause the sort of grief to my child that no mother would wish upon their beloved children.  I am afraid of my son being scarred by my death.  I am afraid of how deeply pained my husband would be to face funeral arrangements for me.  I am afraid of the bills I might leave behind, not at all the sort of reminders I want him to have to tackle in the days, months, or years after I'm gone.  I am afraid of dying because of the grief it would cause my family and friends.

2.  Hospitals/ERs

This is a bit more visceral and instinctual.  I am afraid of the hospital because I fear I will one fateful day end up in them.  I am afraid of the dire straits I'd be in that would lead me to be hospitalized.  I have this looming dread and certainty that I will end up in the ER at least some day.  I scare myself with imaginings of the catastrophic series of events that might lead me there.  I still go to the ER or hospital to visit friends, and I am able to shake the creeping feeling of anxiety and worry for myself, but it almost always is there when I first set foot inside.  Think of it like how we all felt about the principal's office when we were in elementary school.  Even if we had good and legitimate reasons to be in the front office or (gasp) the principal's office, it was a place we cringed at having to go near.  It also is related to the first fear, that of dying, because after all, if something went so wrong as to land me in the hospital, that might just be the time it kills me.

3.  Lingering Suffering

I have this lingering dread when I hurt that I never will stop that particular round of pain.  When I flare, I worry that life will be like that all the time.  It can make it nearly impossible to be objective about my state over extended periods of time.  Time slows when I hurt, so the idea of that stretching on and on... it can be nearly unbearable.  This is part of why I don't like the "buck up and live life" attitude.  Sometimes it just isn't possible to sludge through both hurting and despairing to act happy and well-adjusted as some folks seem to think I should.  Not when the pain drags on, and all I can see before me is more of the same.  My spirit quails at the very thought.  Thankfully I don't have to face that, and there always has been a reprieve of some sort.  I simply am afraid that one day there won't be.

4.  Medicines

This is a two-edged sword.  I am both afraid of and grateful for my medicines.  I am fearful of the new medications I may be put on, and hopeful too.  I am afraid of side-effects, some of which could be quite devastating.  (I have heard of some folks whose bodies reacted violently to some of these drugs.)  I am very much afraid it won't work.  I fear it won't work well enough.  I dislike taking so many pills, and am afraid of shots and infusions.  I don't like needles at all, really, and IVs have never gotten along well with my veins.  Taking chemo drugs is scary all by itself, truthfully.  One never wakes up one day and suddenly think, "This time next year, I'll be taking over fifty pills a week."  It just isn't something you want to see for your future.

5.  Being Alone

As much as I fear leaving my husband alone, I also fear being left on my own to face this disease by myself.  I don't feel like I could do it.  The practical side of me insists I'd find a way, of course, but my fears are not generally very practical in nature.  They are seated in my heart, which aches with the idea of dealing with all this alone.  I am so very deeply grateful for my husband and all the support, love, and understanding he provides.  Without that, I would be lost.  Truly.  I need that strength, courage, solace, and support.  Without it, I would surely fall into an unending pit of despair.  Which brings me to my next fear.

6.  Depression

This is one very real, very terrifying yawning depth to which I can easily see myself falling.  It goes beyond unhappiness and beyond logical fears in regards to pain.  It is its own reality, its own world of darkness.  Just imagine, for a moment, one of the worst moments of your life.  It doesn't matter whether it was an emotional one, a physical one, something you saw happen to someone else or something that happened to you personally.  Just for a moment hold that event in your mind.  Now imagine that event happening for the rest of your life.  That same thing, to varying degrees, over and over.  For a few heartbeats, know deep down that you will endure that until the day you die.  That same wrenching, painful, despairing, blindingly difficult event, stretching for the rest of your life.  Sometimes that is how it feels to face a life-long disease.  Some days it is softer, less prevalent, but it is always there.  That sort of knowledge tugs at a person's spirit, leadens the heart, saps the energy, causes a pain all its own.  It's unspeakably hard.  That is why I fear depression.  For me, it could very well become reality if I can't find the strength to haul myself out of that dark pit and press on.

These are by no means the only fears I wrestle with.  I know they are terribly dark and uncomfortable, but they are my life, they are what I face and move past, or try to.  Perhaps you face these same fears.  Perhaps someone you know is struggling with them.  Love, compassion, sympathy, understanding... these are things that help combat such difficulties.  It can't be done alone.  Love those close to you.  Give to them these gifts to help them along.  Accept such gifts, for we all have fears we must overcome.