Tag Archives: life lessons

The Choice of Someone with Progressive Disease to Stop Treatment

Posted on by a rainbow at night

I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

“Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

“Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

 

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuiton), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again. (I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.)

 

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

 

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with God’s will. Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on “What if I make the wrong decision?” that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

 

♥ a rainbow at night

 

Quote by David Bate. A watercolour painting I’ve been working on for a couple of months. :)
The simplicity of this one just gets to me. I’m not sure anyone else likes it, but this is probably one of my favourite photos I’ve taken.
Who’d expect this photo opportunity to turn up outside a fast-food restaurant?

What all could you do if you just changed your expectations of how to do it?

Posted on by a rainbow at night

My art supplies have been in the largest cabinet of my six-foot-tall dresser since I moved into this house, and even in the old house, they were put away because I was too sick to do anything except extremely sporadic artwork. And I don’t believe in putting a bunch of “supposed to finish” projects out and about; I think it leads to stress. I didn’t need to stare at things that were impossible at the time, reminding me of what I couldn’t do because of the effects of being in treatment, and the limitations imposed by disease. I think the things you need to put in your immediate vision, around your workspace, are the things you’re actually going to work on.

And now it’s time to bring them out.

 

I am going to paint. I am going to convert my desk–which up until now has been used for normal desk activities–into a place for my art supplies. My white writing desk is going in the living room, and I’m bringing in my larger, flatter one to better serve my purposes. And a lamp. And a printer. But I digress…

Most won’t understand the significance of me, someone with OCD, converting their perfectly markless desk into an art station, where it will most certainly become covered in…everything.

Luna got me more watercolours.
Melissa got me more charcoal.
I just re-found my ink.

Things are not going to stay clean.

 

I can’t do art like I used to do. (Or perhaps I could, just once, but having my arms take two months to recover from such an unwise activity is just..dumb.) And you know what? That’s okay. Now I can do different things, perhaps better things. I’ve only recently begun to see the thrill of painting, and I can learn more. I just can no longer expect myself to sit down and complete a project all in one go, like I used to…

And it wasn’t bad that I did things like that. It was what I was capable of at the time. If I had a random hour of being able to sit up then I had to use it wisely and do whatever I could in that hour, because it could be months before I got that chance again. My usual daily limit of being upright was less than 30 minutes per day, which I usually needed to eat and bathe.

Long before that, I would draw for hours at a time, relax with music and my pencils and everything else faded away…

But some days I still may be able to paint for hours, like the day I made this poster for my niece, combining some ideas I saw on Tumblr:

For my niece, so she will have something to remind her that someone thought she was amazing and wonderful.

 

Other days, and probably most days, I can go back and forth between desk and bed–whether it’s a physical desk or my overbed desk–sitting up and painting for short stretches of time, and lying back down while I wait for the paper to dry between layers. (That works out, doesn’t it?) And I’m okay with having to do that.

I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.
What do you think you could still do if you just changed your expectations of how it “needed” to be done?

 

♥ a rainbow at night

What do you really want your good health for, anyway? (Don’t wait.)

Posted on by a rainbow at night

It probably shows in my recent posts that I’ve gone through a lot of changes in the past few months, physically and mentally.

When you’re in treatment for an illness like chronic Lyme disease, ideally you have to put off certain goals or extra activities because letting your body heal is the priority. And when you have something like myalgic encephalomyelitis, you shouldn’t push yourself too much because abstaining from chronic over-exertion will give you the best long-term prognosis; repeated self-induced “crashes” will harm you.

But faced with two relapses, the possibility of another gradual decline, and the complete mental and emotional exhaustion that arises after four consecutive years of fighting for your life, I came to some big conclusions in early December:

This is the only life I have, it’s okay to make whatever decisions I think are necessary to live it, and I cannot put anything on hold anymore.

There is no longer a “things I’ll do when I get better” category in my brain. And it’s not that I don’t believe I can get better–I believe anything is a possibility.  (And how I love that word. “Possibility.” Almost as much as I love the word “indefinitely.” Indefinite possibility means, at once, what is uncertain is also limitless.) But like I said a few posts ago, even looking forward positively is still not living in the moment. You can’t get caught up in all the things you’re looking forward to having or being or doing, because you’ll miss the opportunities of the only life you actually have–the life you’re currently living.

Besides, what do you really want your good health for, anyway? I realized that many of the things I wanted to do were still possible if I just went about them a different way and stopped waiting for that imagined “better time” in the future… A future I’m not even guaranteed to get.

Would you live your dreams? Well, find some that are still achievable, and get started. If there aren’t any, create new ones. Would you spend more time with your family? You can still prioritize that, you just have to do it differently than when you were “healthy.” Would you be a better spouse/parent/friend? Don’t wait to unveil that version of yourself you’ve always imagined. They’re in there, and you can get closer to being that person moment-by-moment.

Another thing I learned is that I can’t expect people to understand where I am with this, if they haven’t been here.

My blog is (for my expression, but) less for people who are just now starting their fight than it is for people who have went a few rounds with their disease until they had to just Let It Be. I’ve had people think me delusional for their lack of understanding, just as I probably would have thought of someone like The Current Me, back when I was just starting out. And that’s okay. I hope they find this place gracefully if they also end up navigating it.

So with that in mind, I made some resolutions for this year. To be continued…

 

♥ a rainbow at night

Christianity never helped me deal with chronic illness.

Posted on by a rainbow at night

It told me–or maybe it was mostly the people involved–to “hold on to God’s promise” and that this translated to me getting what I wanted if I just “believed” hard enough.

Looking back on that now, it sounds like a bait and switch. And people are usually pretty pissed when you do the switch.

 

I realized several days ago, as I was reading something Christian-based, that I am still angry at Christianity to the point that I forget its good parts. I honestly feel that what the religion is today is a mockery of what Jesus was sent to help create, so I don’t feel disrespectful offering my opinion on NOT liking what the religion has become.

But I need to learn to focus on its core, and not judge Christianity by the actions of the people who call themselves Christians. The anger that arises in me is the whisper, telling me that I need to find forgiveness; for the brainwashing when I was at my most vulnerable; for the perception that those years were wasted on false promises when they could have been used to help me find REAL meaning instead of “if you’re sick it’s your fault for not believing in God enough.”

Forgiveness is letting go of the hope that the past could have been any different. And it’s over, so I need to move on… After I properly grieve.

 

So yes, Christianity never helped me with illness. It was judgmental. People blamed me, said I wasn’t doing something right, and that God was “allowing satan to punish” me for it.

From what I’ve seen, these are the major reasons people stop believing in any religion, especially Christianity: They are led to believe that (1) God hates them, (2) that God is punishing them for something, and (3) they can’t possibly wrap their minds around praying to anything that could “allow” so much suffering in this world… Which, from my previously Christian standpoint, did indeed make me awfully confused. But from my current, well-rounded standpoint, that I in no way achieved through the Christian religion, I understand it much, much better.

I’m a Universalist so I believe God is Love and there are infinite ways to connect to the divine. I don’t believe God, the Universe, controls our actions. It wants to lead us in the right way, toward Love, which is our true form, our connection to the Source, but it can’t stop us from hurting ourselves or others. That’s the free will part.

Many Christians I was around felt like they had to protect the image of the god in their head through bizarre logic, such as: If you believe in Him, nothing “bad” will ever happen to you. (And of course “bad” can be subjective. For example, I no longer see illness as something “bad” but as a part of life, like getting older. We all get sick eventually.) Or if something bad does happen, it’s because you weren’t doing something right, and these bad things will continue to happen until you get rid of all the “evil” in your life. I.e., Everything is your fault.

In my case, during my first years of being ill, their descriptions of the “evil” in my life were: “Stop drawing dragons, they’re symbols of the devil!”; “Someone in your household has been watching pornography!”; “Get rid of that gargoyle, it has a ~bad energy~ and it’s evil!” (I guess they forgot gargoyles are on cathedrals…); “This is a generational curse because your parents had an affair!”

It was all about letting other people tell me what I needed to do to earn their god’s love, what I had to do before He would take away this “curse” which had been bestowed upon my physical form because I wasn’t “perfect” enough to receive his mercy. (Sarcasm alert…) Because, you know, it’s so much better to have no spiritual direction and a broken soul but be physically healed, than it is to be spiritually and emotionally whole but fragile with physical illness. (…Okay, sarcasm over.)

How rarely people mention the SPIRITUAL HEALING part of that “you will be healed” promise in the Bible, instead of interpreting it as “pray and all physical illness will leave you.” With that flawed Christian-based logic, I guess Tammy Faye Bakker died from cancer because she didn’t love God enough? (Still being sarcastic, there. That’s not true at all!)

Become closer to God, closer to Love, closer to the Universal tie that connects us, and you will find healing. Perhaps not physically, but spiritually, emotionally. That is how I interpret that metaphorical promise in the bible, a book I firmly believe was intended as a metaphorical masterpiece never to be taken literally.

 

The goal of being “perfect,” especially to a judgemental human’s eyes, is completely unattainable. It will leave you struggling in self-hatred until you die because nothing will ever be enough. A belief in God is not your way out of anything negative ever happening to you.

Like the Buddhists, I believe life is suffering. Bad things do happen to good people. Hurting people hurt other people with their free will. Disease happens. Natural disasters happen. I can’t say I understand every instance of things, but I do know from those situations, with guidance, come some of the strongest people on this earth. Through all the pain comes forth a warrior. I’m one of them. And I use that strength to try to help and inspire people… So how dare anyone try to say God was “punishing” me, with the likes of something that happens to all of us.

It’s not a “one size fits all” where disease is a punishment that “shouldn’t” exist. Disease exists. If you have a body, it can and will get diseased and die. Life is a fatal condition, as the saying goes.

I think wonderful things can come from having experienced illness, and its’ timing is absolutely essential to how our lives turn out. For some, it’s the only way they are going to stop and think, about their lives, about their actions… How many near-death experiences, how many sicknesses, bring people closer to the divine and/or what’s really important to them? That’s not an accident, not in my book. Illness also profoundly affects the lives of those closest to the person who has disease.

If someone can look at me and say that God has not healed me, they’re not looking closely enough. I used to be so angry, and led by negative emotion, and torn. Nothing could have ever stopped me in my tracks like disease has…and yet, I wouldn’t change a thing if given the chance, because no other turn of events could have landed me here today. I think I’d be like so many people, going through the motions of The American Dream thinking it’d give me happiness but never finding it.

Through great suffering comes great reward. It’s not what I would have chosen for myself, but I am amazed at how it’s all come together, at the person I am and who I’m becoming.

 

People lied to me, but they didn’t know they were hurting me. They didn’t know they were blaming me for my disease because of their own desire to protect the image of god in their head; because of their inability to handle the thought of their god “allowing” illness to happen; because they saw illness as a curse to be delivered from, not a fact of life with which one copes. They didn’t know it all came from their fear of not being in control.

It reminds me of this thing I once got from a Facebook app:

“True faith flowers from and through doubt.

If you never question your beliefs, you are just a puppet dancing to somebody’s strings. If God had wanted your mindless obedience, you would’ve been created without mind and without free will. But you have both so you can come to God of your own accord. Just look at the lives of saints: Most of them had gone through a dark night of the soul, and that’s why their faith was so strong. The path to true faith always goes through doubt. So ask those questions you’ve always been afraid to ask, and find the answers. Then your faith will become unshakable.”

I’m glad I asked the questions, I’m glad I doubted, and even if I am still working on my forgiveness, I am glad I am not that which has hurt me so that I will not hurt others in the same way. And may it be so.

♥ a rainbow at night

“All is well, and has been, and will be.”

Posted on by a rainbow at night

This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! But I can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus in something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful it brought information my way when it did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive changes that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact…

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

♥ a rainbow at night

Unpopular opinion time: Which is better?

Posted on by a rainbow at night

I don’t know why this is an unpopular opinion, but it is:

I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.

If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, would not have given me the lessons I was meant to learn, so here I am.

Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.

All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had.

This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which simply seek to be realistic, accept What Is, and not live life in a constant state of wanting. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but that suffering also exists– as a fact and not a punishment.

Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating.

I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it. But while you’re waiting for things to change, you have to accept the way things currently are; you have to realize what you have, and realize how blessed/fortunate you are to even have that. If you have something that the majority of the world does not, you are blessed.

You have to realize how amazing it is that you have methods to help manage your illness; medicine to help ease your pain; things like soft beds to lie in; the right food to eat when so many of us have allergies and intolerances, a place to live that has temperature control when most of us have dysautonomia. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do.

I can’t forget that if I were somewhere else without these accomodations, I would perish.

Of course it is disappointing when there exists external items to help you even further, that are created for the purpose of helping–like money, certain foods, certain medical treatments–and for whatever reason, you don’t have access to them.

All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both seperate, distinct conditions). I see people with Lyme disease and its related infections trying to raise funds for their own treatment and cure which DOES exist, but because our government does not currently believe in our illness, getting access to it is sometimes impossible. I see people who are disabled and, due to the system we’ve created, should be able to receive benefits to live on, but are not getting them. Things are not perfect.

But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago?

Sometimes when I am in those situations–lacking things that I “should” have, but do not–I try to find gratitude for those that do have them. I try to be happy for those whose test results and various means of funding enabled them to get PICC lines and ports and hyperbaric oxygen therapy; somewhere there is a person who cannot get any antibiotics, who wishes they had the medication I do. Somewhere out there is a person who wishes they had a doctor who believed them; adequate pain management; funding to get accomodations for daily living; friends who were there for them; family who supported them.

I’m still going to be extremely disgruntled when my head feels like it’d be better off removed.

I’m still going to feel like crying when I hear another child with M.E. has been forced into asylym because their doctors do not understand what they’re doing.

I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system is too poor to make the tests show my positive antibiodies.

Again, I am not saying we are to be emotionless zombies without a reaction to anything. I don’t want to type this and make it seem like I live in another world where nothing bothers me. I am trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.

I just find it better to guide our thoughts into being thankful, instead of dedicating so much of our time and energy to things we do not possess; self-compassion is better than self-pity. I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled, but blessed that we got sick in a place where anything at all could be done for us.

I just find it better to live in gratitude.

 

♥ a rainbow at night

(Postscript: I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed it enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)

“Just try harder”: The Health Bootstraps (via this ain’t livin’)

Posted on by a rainbow at night

“Health is a highly variable thing. … Two people with asthma, for instance, can have radically different experiences. One of them might respond extremely well to medications, could experience some benefits with dietary changes, and might find that the asthma is very controllable. … This is the good asthma patient, the one who tried harder and succeeded and is doing well and is a model for other patients.

The other asthma patient tries a series of inhalers that don’t work very well. … The patient tries complementary medicine to see if it will be effective, but it’s not, really. This patient is constantly relying on a rescue inhaler, wheezes on short walks up the stairs, has poorly controlled asthma.

‘Poorly controlled’ is a telling phrase, because it suggests the patient is in control of the illness, and should be able to beat it by trying harder. Yet, this patient is trying, and is following all the directives. This patient is taking medications and considering other options and meeting regularly with a care provider. The patient’s asthma just isn’t very responsive to treatment, which means there’s going to be a lifetime of struggle with hospitalizations, endless switches between medications, and other problems. Not because the patient is a bad person unwilling to bootstrap out of chronic illness, but because the patient’s particular manifestation of illness is refractory.

Illness is not uniform.” Read more

via this ain’t livin’

I am not my body.

Posted on by a rainbow at night

And yet, I am.

I am not my body because I am not the sickness. I am not the weakness, pain, and systemic dysfunction that prevents me from doing what I attempt on any given day. I am not what my disease does, whether that be physical or mental, and I will not feel guilty because my body is sick. It is not my fault that it cannot function like that of the next “healthy” person. I am separate, I am not the disease, I am not the symptoms, I am not my body.

But I am my body because we have one very important thing in common: No matter what is going on, it always functions to the best of its ability. Each and every moment it aims to support and accommodate me in all that I–and disease–attempt to do. You’re never going to wake up one morning and have it go, “No, don’t feel like giving my all today, sorry.” It may feel like it sometimes, but it never slacks off. It will always do for you everything within its power to keep things running as smoothly as is possible for your situation. A very profound statement was uttered by the doctor of one of my fellow Lymies:

“Your body didn’t betray you. It just compensated and compensated until it couldn’t anymore.” – via Lyme Chick‘s wise doctor

Have truer words been spoken?

This morning I woke up with a rash on my neck. It’s always been one of my signs that my immune system is strained. My first instinct was to berate my immune system for not working properly–don’t I go through enough? But wait a minute… Did it purposely fail me, or not try hard enough to function properly? Did it just get lazy and decide to rash me up? No, not at all. It’s trying its best to support me.

Sometimes what it tries isn’t enough. Sometimes it might even attack me out of confusion. But it, like myself, will always do what it thinks is right, will constantly adapt over and over again to acclimate to the environment.

I am not my body’s shortcomings. It’s doing the best it can for me.

♥ a rainbow at night

(P.S. – Apology for my extended absence forthcoming…)

Having determination does not always equal curing a disease.

Posted on by a rainbow at night

I don’t think some people are prepared to hear that determination alone is not enough to beat a disease. You can do everything right and still get worse, and it’s not your fault. You can’t say being motivated and refusing your circumstances (“I got better because I wouldn’t settle for anything less!”) is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.

This post is for you.

The people who stay sick still matter. The people who die from their disease still matter. It is not your fault.

No one talks about these things out of fear of being attacked for it… I guess it’s a lesson to be learned by those who have that journey. As Oscar Wilde said, “Nothing that is worth knowing can be taught.”

♥ a rainbow at night

Guest blogger: “It is healthy to talk about what you are going through.”

Posted on by a rainbow at night

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

– the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

♥ a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.