I am known for being hard on myself and holding the bar higher then most- it's simply a part of my personality. Always was, always will be. It's part of why I had 3 majors when I was a Division I NCAA Rower at the University of Kansas. It's part of why I have trouble to this day with my own body's uncooperative behavior and still try to control the uncontrollable disease and symptoms I face regularly. I have realized that control is not necessarily a bad thing, though it is often referred to negatively. Not being able to accept lack of control over situations is quite damaging however!
I am told that "you are smart, great with people, dedicated and responsible... we love having you here! You have great social skills & enthusiasm but...". BUT...
'yeah. I know...'. I'm unreliable...
"If you ever get better PLEASE return to us..."
'uh huh. I will see what I can do...' I say walking away with tears in my eyes. Again.
"It isn't personal at all & we wish there was another option. But..."
SIGH. "I understand & I know".
But, I don't know anything- that's the problem. I don't know what will happen or won't; what I may be capable of vs what I will be setting myself up for failure if I commit to. You don't know unless you try - that is true but when you try and fail over & over, that saying does not seem nearly as inspiring!
But, I don't know anything- that's the problem. I don't know what will happen or won't; what I may be capable of vs what I will be setting myself up for failure if I commit to. You don't know unless you try - that is true but when you try and fail over & over, that saying does not seem nearly as inspiring!
Sadly there is no instruction manual for your chronic Lyme, Many of you know this story in varying versions depending on where in the world you are, if you are the main character or a supporting Actor/Actress in this narrative, and of course stories change the minute they become told. There are flourishes and omissions and perspectives and lies and opinions and truths. Sometimes the character gets a chance to share part of the truth. And that is something I expected to do more of with the blog - more of my personal stories - even bits of the horrors I've had to handle; if it's serving another purpose then just relaying personal details to strangers then I can handle that - if it's part of a unique & personal story,example, symptom, issue or will do us some justice simply b being out there in all it's horror for people to pay attention to and say "hey we need to figure this Lyme business out. It's serious!" then it's worth it. That is part of my new chapter for sure. I now realize that this whim is useful to others. Like a lot of others & anywhere we share the illness &/or the politics & greed behind this shameful scandal in our human and national histories, we share a history & hope for the future. I wish I had realized what power I had simply by surviving - I am a survivor as we speak of the Lyme spirochete. I am a victim of bureaucratic bullshit, corporate greed, human apathy, and worst of all of the idea that some of "us" are disposable. If I wasn't one those types prior to the Lyme I am now for sure. Not just in society either. We have all been disposed of emotionally, physically, financially, medically & even those who help us don't hand out empathy & understanding & kindness... it's mistrust, misunderstanding, & their constant thinking that it's something else, or it's Lyme & something else or you can fix this but not that or you should be able to...
How often do we hear this? SHOULD? I always want to say "according to?". And see if they say "our Lord & maker" or a "democratic government health" organization. It's an oxymoron any way you put them together. According to... You & the government can team up and tell us all the "should's and should not's". Then for research purposes please allow us to administer a small dose of Lyme to you & in one year please return and tell me all of them again before you begin treatment. I am serious. Man up! You should be able to handle it. If I can - you should...
 |
| Add chttps://plus.google.com/u/0/communities/107447406412854645080aption |
You should be able to!
Well just when I started getting some should and should not-ists out of here I began picking up their reins. I didn't realize how easy it is to get hooked on should's. It is like you use it one time and befor eyou know it, you are shoulding 20-30 times a day. It is serious. Sometimes it results in severe dependency & when you spend all your time doing that you aren't focusing on proactive & POSSIBLE ways to help yourself, help others, educate people, build relationships, learn about nutrition & health, or the thing that Lyme made us all put last in line regularly: take care of you. I mean CARE & that ain't in a bag of saline or a bottle of pills either. It's midfulness, it's friends, it's prayer, it's breathing, it's relaxation. It's the ability to lose the Lyme identity for any amount of time; to stop thinking about it, fighting it, handling it or not handling it because you can't treat yourself! It's becoming yourself without it temporarily as a mental vacation which also allows you to regain your footing and take some control away from the bacteria again. It's hard to do & the worse you are the harder it becomes. The should's just become all you think about 24/7 & before you know it 12 years have gone by. You need to stop "shoulding". You need to tell others around to stop. If they won't you need to distance yourself. The shoulds often come from those closest to us - I do know what I am asking. But a life of imposed ideas and identites on top of this disease... trust me it won't fix itself. If you try to fix it in yourself you may suceed but until someone else is ready you can't save them. And they take you down with them. Actually they put you down instead - you are rarely "with them" because you're so focused on the defense against the "should's").
But there is hope!
Here at BETWEEN HEALTH & WEALTH AVENUES we will help each other in a supportive community dedicated to having healthy thoughts & words with ourselves and others. There is should rehabilitation through BHWA international support for members. It is provided free of charge not because we can afford to hand out free help being a lymie ourselves but because it is a way of justice for us all until these Lyme Wars end. They should...soon as all the decision makers have someone who suffers this somehow - someone they didn't make certain was on the guest list... perhaps a friend, a lover, a child's friend or lover (a grown child please.) or someone who just didn't catch it early or treat it long enough & not due to policy or lack of coverage just because it is a devastating, progressing, thought changing, life altering, and painful disease. And the world watches and waits for the day someone gets up who has the power and authority to begin broad and fast changes to this corruption & cover up. Mark my words - it's coming soon. We should be ashamed already & I don't even know what the uncovering will uncover exactly. Believe me I have many ideas & won't be at all surprised by a number of things when they come tumbling down but I am waiting for THE thing. THE UNKNOWN that will make me gasp. Is it an STD? Did it come from our own hands; is it a man made weapon we invented right here to battle communists with? Is it an experiment? How long & how much money is worth this loss, this suffering, this struggle. I bet it's billions. I truly believe if we have to prove it's chronic then they need to prove it isn't. Treat us all. Prove it! Or just give all policy makers and their families a required summer of camping in Connecticut & promise each member a full month of antibiotics. No doubt their certainty will waiver. At least it should.
REMEMBER THE PAST & FUTURE ARE NOT FOR US TO CHOOSE - WE ALL WISH THE LYME HADN'T COME TO US; WE STILL HAVE TO CHOOSE WHAT TO DO WITH THE TIME THAT IS GIVEN TO US WITH THIS ILLNESS(to paraphrase Gandalf the Grey). I CHOOSE TO BE PROACTIVE AND TO TRY TO GET MY "SHOULD'S" SOBER & UNDER CONTROL...
SOMETIMES THE WORST OFFENDERS AREN'T OURSELVES BUT OUTSIDERS; FAMILY & FRIENDS... DON'T LET THEIR SHOULD'S CONTROL YOU EITHER! SO KEEP YOUR HEAD UP, EAT WELL & REMEMBER YOU BELONG HERE & ARE NEVER ALONE! I WISH YOU A HAPPY, HEALTHY, HEALING DAY FULL OF HOPE & WONDER! STAY STRONG & LIVE LONG...
REMEMBER THE PAST & FUTURE ARE NOT FOR US TO CHOOSE - WE ALL WISH THE LYME HADN'T COME TO US; WE STILL HAVE TO CHOOSE WHAT TO DO WITH THE TIME THAT IS GIVEN TO US WITH THIS ILLNESS(to paraphrase Gandalf the Grey). I CHOOSE TO BE PROACTIVE AND TO TRY TO GET MY "SHOULD'S" SOBER & UNDER CONTROL...
SOMETIMES THE WORST OFFENDERS AREN'T OURSELVES BUT OUTSIDERS; FAMILY & FRIENDS... DON'T LET THEIR SHOULD'S CONTROL YOU EITHER! SO KEEP YOUR HEAD UP, EAT WELL & REMEMBER YOU BELONG HERE & ARE NEVER ALONE! I WISH YOU A HAPPY, HEALTHY, HEALING DAY FULL OF HOPE & WONDER! STAY STRONG & LIVE LONG...
No comments:
Post a Comment