Monkey Comfort

People seem to have a problem with understanding a few things and I would LOVE to set the record straight (as I see it, so, slightly skewed, I suppose).

If I come to you with a problem, NO MATTER WHAT THE PROBLEM IS, I am probably coming to you because I trust you, I feel safe around you, and I feel you are a soft place to land.  I have discovered over the past three years who most of these people are, but every so often one surprises me and I land in a hard, rocky place with no comfort.  If I have dared to ask you for advice or insight, it is because you have shown yourself to be a wise person.

I don’t need for you to shame me because I take prescribed meds for any purpose or because I am not following a regimen that your doctor has you on for something similar, but different.  I don’t need you to tell me that I am probably blowing it out of proportion or that I shouldn’t be concerned because I don’t really know.  Surely I don’t need you to tell me to get a job when you know NOTHIN’ JON SNOW!  It never even dawned on you that my doctors don’t think that is a healthy choice.  You never considered that my neurologist knows more about my brain than either of us do! You never considered that I was coming to you because I needed you to tell me that it was ok to be scared but that I was surrounded by people who love me and even if my world comes crashing down, you will still be there to comfort me.

I wish I had realized all of this before I began sharing my life with my associates, but I thought we were here to love each other and be understanding of the hearts of one another.  Of course there are times when we have to be serious and stern and put a foot down, but not when someone is pouring out their heart.  This is a time to listen to what someone is truly saying to you.  Often we just need someone to tell us that it is normal to feel sad/weird/upset/angry/resentful in this situation BUT they can leave off why it isn’t right and why you should do better.  Give each person time to come to terms with their feelings and then they are better able to listen to HOW to change the behaviour or outcome.

For more than three years I have had to deal with people telling me how to fix a problem that we are just now beginning to understand.  There is more than one problem, but one likely inspired the other to come to fruition since there is a genetic link.  I have felt like I have lost great chunks of my life (let me remind you that I get his with “oh, I lose my keys too!” and it is SO degrading at this point) and I have had this all but confirmed by one of my neurologists.  After testing, we will be sure, but when you see it with your own eyes, it is hard to deny the truth of the matter.

The best part? I have to put on my smile and keep going and at this point suffer in silence because almost nobody actually hears what I am saying.  As of two days ago I was medically banned from driving, swimming, taking a shower in the house alone, being by myself, going to the gym, dancing, and anything that could cause harm to myself or others, until further notice.  I refuse to tell people why.  Why does it matter now?  Is it because now you might get a glimpse of what is going on so you can actually believe what I have been saying?

Ya’ll detect some resentment here?

This is the part I have to work on.  I can’t live resenting people and their callous words because I know that in reality, they are probably doing the best they can and don’t know how to be any better.  Some might even say I am in a position to enlighten people and bring them to a place of understanding hidden illness and how it affects the different facets of a person but I don’t really know how to do that yet.  Sometimes I try to explain and I get a mansplaining I won’t soon forget (but luckily I usually do).  I am trying to make sure I use these experiences for myself, to thicken my skin and toughen my heart.  I cannot let the words of others be the downfall of my spirit.

When someone comes to you for reassurance that the world isn’t caving in on them, don’t use your logic, use your heart.  Assure them that you understand how upset they are and love on them.  I am NOT saying agree with them or help perpetuate something that is dangerous or unhealthy, just acknowledge their feelings and listen to them.  Don’t tell them how this could have been avoided, or how it was when you were in a similar, but different, situation. JUST LISTEN and reassure them that is it ok to be upset but not to take out your feeling on others.

For anyone who can’t seem to put together what I am saying, I will put it in steps for you.  When your friend comes to you in emotional distress:

1. Ask them if you can get them anything (like water).
2. Ask them what is going on, but ONLY if you are willing to actually listen.
3. LISTEN actively.  Make eye contact, nod in understanding, and if there is something you don’t understand, ask for clarification if it is important to the situation.
4. Confirm that you heard what the person is saying and validate that they have feelings concerning whatever it is they came to you about. (This DOES NOT mean you agree with the situation, only that they have feelings about it.)
5. Ask if there is anything you can do to help friend get through this situation.  Follow through if they ask for something.
6. Check on friend in a day or so and see how they are feeling about the situation and maybe this is the time to talk about solutions if they are ready.

I hope this helps us all become better listeners and friend because let’s face it, we aren’t running out of problems anytime soon!

*Note: if you see something you have said or done on this list and feel convicted about it, don’t worry, all of these situations have happened multiple times.  Individually, you were only one stone on my chest.  Don’t feel bad; do better.

The Troubled Monkey

Life has thrown some curveballs.  Right now, it is raining curveballs.  Even as good things are happening out of nowhere, our family is being stretched in other ways.  With nothing extra happening, I am tired.  Right now, I am in a medical testing phase, which is physically draining.  The tests can be rigorous (like the FCE) and the schedule of appointments can be frustrating.

This week alone I saw four doctors in three days.  My sister hurt her arm, so that is always another concern of mine.  I worry about her like a sister do.  I just want her to be happy and healthy, but life.

A close cousin lost her job.  A family friend is in the hospital.  we just had to get extensive work on BOTH of our vehicles.  While all of this is stressful, yesterday we learned that my uncle was given three months to live.  It isn’t just that, it is that while he has been dealing with cancer, I have been dealing with my brain.  All this time, my mother chose to stay here to help take care of me and my daughter and now her time with her brother is waning.

I can’t imagine the decisions she has had to make to ensure my care.  Thankfully, my car accident case just settled and while it isn’t much, it is enough to send my mother home sooner than planned if needed.

I am happy that most people don’t live in the constant state of turmoil that my family is often in.  It is so stressful.  Everyone and every family has issues, but chronic illness adds a new dimension to life.  I often have multiple appointments scheduled three to four months out at a time.  So, when we are hit with emergencies, we get spread thin.  We make it through, but we get tired.  As a family, we are tired.  It’s hard, but this is why in every post that I can I tell you to get a support system and use them!

For me, that is my family, my pastors, friends, and my therapists.  No one person can fill every role nor should they be expected to.  In times like these, my family has to diversify and reach outward for support as a group.  Our family as an entity must be protected and the people who love and care for us have rallied around us as we rally around another family member.  Layers of support in a beautiful show of love.

This is what drives me to continue helping other people is sometimes I have to be on the receiving end and remember what it feels like to be helpless in some way.  It drives me to mend that hurt in the lives of others if I can.

I don’t really know how much of this family issue I will share in the future, but I feel like it is important for everyone to understand that just because my family is dealing with one big thing doesn’t mean we are immune to another major event overlapping it.  It also does not negate the normal parts of life that have to be dealt with: check-ups, dentist, tire rotation, meals, bloodwork, grocery shopping, appliance replacement, coffee, laundry, and all of the other things that it takes to live well.

My illness has simply added another facet to the gem that is my family and gives us the opportunity to shine brightly even when it seems dark and the light can’t be found.  The lapidary of life is fashioning us into something amazing.  Sometimes that means going against the grinding stone and becoming something new.  Doesn’t feel great, but we will be better off for it.

Life doesn’t feel great when we are in the midst of the storm, but eventually the waters recede and you can already see growth that just could not have happened in good times.  So again, I encourage you to find and build up your support system and make sure that you are part of the support system for others.  Never just be an outlet, pour into other people.

The Monkey: Background

It has been a long time.  I would call it my sacrifice but each of us has given up something so that my daughter would have a place to sleep that was safe and loving.  Most people don’t know or understand the actual events that led up to me living with my parents.  Many people assume I am spoiled and have lived with them all along.  Many people think that it is because of the brain surgery.  It is actually because I was missing so much work from my sinus problems (had to get an operation) and the problems following THAT surgery, (had to get tonsils out ten months later) and I wasn’t able to cover my bills because I missed too much work.  I worked and went to school, so my daughter was already staying with them.  I moved in and about a year later got into the car accident that would change my life.  I stayed with them after the throat surgery because I was determined to finish school.  I had 2 semesters before I for my Associate’s and left for Kentucky for my Bachelor’s and Master’s degrees.

It was really a blessing to already be here when I had to get the brain surgery because I wouldn’t have been able to empty out an apartment in that condition.  It may not be the most ideal situation, but I have a safe place for me and my daughter.  She has been the reason I have accepted my circumstance.  I can’t do better for the both of us right now, so even if my pride took a hit, became a vegetable, and died in solitude a year later, I will make choice to do what is best for her safety and growth.

I am not ashamed to live with my parents.  Quite proud actually.  They have sustained a lifestyle that is capable of supporting themselves as well as us and they do it willingly without making us feel bad for needing help.  I am proud that my parents love me enough to give up space and quiet.

However, there is a part of me that just wants to return to that time I had a life and my own things.  My daughter has two and a half years before she turns 18.  So, I am giving myself that much time to put my life back together and be willing to start over.  While I want to get away, it’s more from the factors outside of my family that are stressors in my life.  I have issues with my family here and there and my daughter is so ‘teenage’ that I could just die of frustration, but I want a quiet life.

I don’t know that this is the thought pattern that people imagine when they see someone in my position.  Or any disabled person.  We actually just want independence and freedom to rule our own roosts.  We want to be the creators of the calm around us and enjoy the art and color schemes we decide on.

Right now we are trying to figure out how functional I am.  Can I get and sustain a job?  So much hinges on this question.  If I can’t, then I have to wait for the disability process to roll along which could take until May 2019 just to get a hearing date.  That could mean no money before October 2019 IF I am approved at the hearing.  If I am deemed able to work, then I will probably stop all of my treatments and rehabs.  I can’t work a full time job and have full time doctor appointments.  However, the OK to work means that I can have an income again.

I dream of having a job.  Feeling that twinge of disappointment every time I look at the taxes they take and yet still, knowing I am about to treat myself to a nice dinner.  Then going home to my own place, where I make up the rules (there are no rules), everything is sparkly, and I can sing at 3am if I feel like it.

I hate waking up to this reality, so that is why I often look forward to bedtime.  at least in my dreams my life is normal and I don’t have anything but the normal worries and cares of someone my age.

Illness, pain, and injury can all steal your dreams from you.  Chronic or acute, your health condition can force major life changes on you that you didn’t even know were possible.  It’s hard for me to figure out what is the worst time period of my life, but this situation DEFINITELY is the worst of my 30s.  It basically trashed my whole life.  Which leaves me to wonder where I go from here.

I don’t recall a time period in my life where I was without a long-term plan for so long.  Even if the plan changed, I had one.  I look out at my life and instead of seeing a thriving land of awesomeness, I see a barren landscape in hues of grey with no point of interest.  I have no direction.  I am not sure what I want to do.  I usually ask other people, “If you could only do one thing for the rest of your life, what would it be?” and I even asked myself that, which is why I went back to school for music.  Now, my answer is probably closer to, “I don’t even care as long as it doesn’t hurt,” because music is no longer realistic.  At least not at this point.

It is quite possible that I will have to do some type of menial labor that doesn’t pay much.  I can handle that.  I feel like I would be able to deal with it because I know that it isn’t the job, it’s how awesome I am at it that matters.  If I am earning my way through life, then I am doing it right!  I hope that whatever happens I handle gracefully.

I say all of this to remind you that you are not the only one living in a situation you want to change and that most other people can’t imagine what you go through to get through your days while holding on to your dignity.  Sometimes we just play the hand we are dealt and try to break even and if you are trying, then you are amazing because so many give up.  It seems frustrating, hopeless, cruel, and unfair to be thrown into a circumstance or feel trapped in one, but just know that you are not alone.  Lots of us want to change the situation we are in and we are trying to figure out day by day how to do just that.

 

Every Day Is Monkey Day

Imagine you are at work laughing and talking with a coworker you have had for years and he brings up how he broke his leg six months ago.  You have zero recollection of this, but you just go along with everyone because either you don’t remember or there is an elaborate plot unfolding around you.

Later you go meet friends for dinner and one friend brings someone you have never met…but she knows your name and about some random fact only you would tell someone.  You ask a lot of questions but nothing is making any sense because this girl is nowhere in your memory.

As you leave and walk to your car you encounter a couple who brighten up as soon as they see you.  You wonder what they are so happy about.  They tell you about an interaction you had many months before and update you on a condition that you have no idea about.

When you get home you brew a pot of coffee and sip and think about how these people know you but NOTHING about them and you are beginning to question the reality of the entire night.  You look at whether you have taken your meds on schedule or whether you have eaten, gotten enough sleep, wore your scarf too tight.  It actually doesn’t take much to begin a downward spiral into the dark hole of our own existential terrors.

Imagine this happens frequently.  You begin a cycle of questioning the reality and validity of things and people.  You spend time not going out for fear that someone else will recognize you.  Eventually, you start to wonder if you are meeting people and completely forgetting them.  If that is the case, are you also doing things and forgetting them?  What have you said that you can’t vouch for?  What have you seen that you may never recall?

Oh, man, the possibilities are endless.

This is what happens to me quite often.  I deal with the public and so I encounter a lot of people.  I mostly only remember the ones I knew prior to the accident.  When it happens, usually I am caught off guard by someone who says my name.

When I look up, some stranger is there with a giant grin and quickly closing in for a hug.  My current situation does not allow me to violently recoil from people, so I end up in the awkward embrace of a stranger who feels like we are friends.  Inevitably, they bring up some “thing” we talked about last time we met.  Then, they have the nerve to look offended when I ask who they are.

Like they are so special that they can jog a memory that doesn’t even exist!  When I remind them that I have memory loss, they counter with something awful like, “don’t we all?! I lost my keys this morning!”  That’s nice Marcy, but I LOST 3 YEARS OF MY MEMORY!!!  Then they get to the dreadful business of explaining the entire interaction from our “alleged” previous encounter. They bring up useless facts like the earrings I wear every day or the types of weather outside.

Then I steadfastly refute any claim of knowing them, their faces turn to a dejected sadness.  Almost like I said they were a nobody.  I suppose it could be taken as you are nobody to me, but that is just because you aren’t a part of my life.  Some people get upset because they think I am being mean.  I am not sure what happens to them after that because I forget a lot of what goes on.  (I had to ask my daughter for info to write this…because I FORGOT!)

My daughter tells me that they come to her hurt and confused as to why I don’t want to talk to them.  Apparently, telling someone “I have poor memory and I probably won’t remember you” isn’t enough.  I have to be the villain and look bad when I make good on that information and have no idea who you are.  Thank you.

On the inside, I feel like my timeline has stopped.  I feel like I live the same day over and over again with minor differences.  It frightens me to think that there is even the possibility that this could be a lifelong problem.  In my head, it might always be 2016.  I may always be 34.  The problem is the dissonance created when the world around me disagrees with everything in my brain.  I feel like I am playing a game of pretend and my life is at stake.

I am glad that my neurologist agrees that this is more than an issue of forgetting when I placed my phone.  In the end, this could be a very serious diagnosis once we look a little closer at my brain, but knowing that I am not crazy and that there is nothing that I could have done to prevent this is reassuring because it lets me know that my brain is malfunctioning and not the people around me (mostly).

I can only imagine the frightening spiral of uncertainty that people must go through when they don’t have adequate medical care or a strong, advocating support system.  I can see how easy it would be to slip into a state that prefers to accept what is in the brain as opposed to what is in the real world.  I am no doctor or scientist, but I live on the precarious edge of reality at times and it is scary to think I might fall one day and nothing is familiar anymore.

For now it is a nagging thought and I hope the tests put some of my fears to rest.  However, this post wasn’t really about me.  At least not my current self.  In the Before Time I was the person who just said things to hurting people to make myself feel more comfortable.  It was never really about their situation, it was about how their situation was affecting me.  Now that I am on the other side I realize what a disgusting human being I have been at times.  I didn’t do it on purpose, I just didn’t know or care.  I try not to get too mad at people about it, but it gets to me at times that people who aren’t 15 or 25 or 30 are saying such insensitive things to me.  Who else are they treating this way?

This is not a time to be ashamed of being a jerk or ignorant, it is the time to just learn about our conditions so that you aren’t making US feel like the crazy ones when we have reasons to be how we are.  It’s time to educate you children on the extremely wide range of disabilities from the most visible to the invisible.  We have to make this world a little more manageable for our kids, some of whom will be born healthy then at some point in life be stricken with injury or illness.  Wouldn’t it be great is they were never treated different?  If they had the amenities of every other child?  Most of all, wouldn’t it be great if people respected your child’s diagnosis without questioning whether your child isn’t just “stupid” or “slow”?

I can’t imagine having the problems I have now as a child who doesn’t understand the world as much and growing up with people not believing me.

Yet here I am as an adult, and people don’t believe what I am telling them.  They all just think if I had some kale, everything would work out.  So, if you happen to be in a similar, awkward place in life where you don’t remember much of anything, I understand your frustration.  Just know that it is usually not the person’s fault and often times you have to be very specific with a person, like this: “It is really nice to meet you again, but remember, I won’t remember you next time we meet and I will wonder why you are weird.”

If someone asks you to remind another person of something, tell them NO!  remind them of your memory and refuse to be responsible for their messages.  If someone tries to get you to commit to something in five weeks, tell them send you an email with an event invite or you will probably book that day for something else.  I do that all the time.

Most importantly, don’t ever blame yourself for something that you really have no control over.  There are many diseases and conditions that are caused by excess weight, poor diet, reckless behaviour, and sedentary lifestyle.  These are the diseases that you should look back on your like and ask what you could had done to prevent it and how you can treat it.  The type of memory loss I am suspected to have is probably cause by my brain drooping out of my skull for so long.  We don’t know how much brain damage it has caused yet.  There is nothing I can do right now but wait and hope for the best and prepare for the worst.

Everyone else, be kind.  life is too hard and too short to treat other people poorly.  Especially when you don’t know the circumstances that made them who and how they are.  Freely give love and may that love be returned to you and your family when you need it.

The Monkey’s Plan: CANCELLED!!

I sometimes wonder what I would be doing right now with my life had I not been in the car accident.  My plan was to move to Louisville, Ky, and finish school.  Then come back to Vegas and open up an art therapy clinic with music, visual, and movement arts.  I was prepared to make every sacrifice, to go broke and bring other people’s bank accounts with me if that’s what it took to make that happen.

Now I don’t spend as much of my time wondering about what-ifs because who is to say something else wouldn’t have happened?  I sometimes try to imagine a future but it doesn’t work like it used to.  In the Before Time I always had a vision of my desired future to strive toward.  I am not sure when that vision faded and was replaced with nothingness.

My life is moving forward, but I am stuck in a sort of limbo that I am having a lot of trouble getting out of.  I really want to have my life back but I realize that is not going to happen.  I just can’t seem to make myself want another life.  I don’t see a life for me as valuable as what I had planned.

I feel like I wasted so much time in school, performing, rehearsing, recitals, practicing, and preparing for a life that I won’t have.  I feel like I wasted so many valuable resources trying to achieve a dream that has now died and haunts me.  I could have saved money and gas and spent more time with my daughter and family.  Now I am left with nothing but knowledge that borders on useless and an intense desire to speed up time.

The worst part is that whatever place I find myself in, I will likely stick to it because I am not too keen on chasing my ambitions anymore.  I just want something that is mine plus peace and quiet.

If the Cleveland Clinic is able to get me back into the job market, I will just travel with the herd and do what I have to do to survive.  If I can do that until retirement, then I will be ok.  That was always the end goal was to work and make it to retirement.  As long as I am a productive member of society, I am ok.

In the same breath, taking a job means stopping my extra activities.  I am no longer in the position to say ‘yes’ to everything and so I would stop all of my volunteer work so that I can be as effective as possible on my job.  I then have to ask myself is the monetary compensation worth more than whatever it is I get out of volunteering?

I hate to even think of the question because I would look and say that volunteering has brought me not much but I enjoy it.  Volunteering isn’t really about what I get out of it, which incidentally is often a headache and back spasms.  Yet it makes me feel like I have done something important.  The downside is that no one will accept my ‘feelings’ in lieu of rent or bill payments.

If I could live off of volunteering I would.  It makes me feel so good.  Then at the end of the day, I have to go back to my life.  I miss having some control over my life.  I miss having money to do stuff.  I miss that feeling of satisfaction after I got the text that my check was deposited.

Having a rare condition is more than just the physical changes that overtake my body.  It is how those changes affect my ability to live and function everyday.   One of the things that has never bounced back is my energy level.  Do I think it will?  With some concentrated effort (Physical therapy is in the works) hopefully I will have the stamina to hold down 40hrs a week doing something that will pay me enough to live and take care of my daughter.  In exchange for being able to survive I will have to give up something else that saps energy away.  I have to have time to rest and recover, especially in the beginning.

When I was told that there was a program that was solely to help reintegrate brain injury patients into the working world, that changed my view of what was now possible.  While I have a business license and would love to be creative and sell fashion, I prefer a steady job where I can just do what I am told to do and go home.  I don’t have to be in charge, I don’t have to make the schedule, I just have to perform some task for 8 hours then I am free to go home.  Just the thought of regaining that portion of my life is so enticing that I can’t help wanting to start this program yesterday!

Will that mean the end of funeral planning?  Probably.  Cooking?  Yup!  Teaching? Yessir!  Five Bible studies? Mmmhmm.  Yet it can be the beginning of a more familiar and comforting ‘new normal’ and that is what I have been looking for.  I am tired of my life wasting away while I come along for the ride.  I have learned so much in the past three years about suffering, I think I could survive even the worst job.

I guess I just miss my life and if given the opportunity right now, I would walk away from everything I do to work for the next 30 years and live in obscurity.  That has always been the end goal of my life dreams and that is what I am looking for.  I feel awful that I would walk away from my position and duties at church and the other places I volunteer, just because I prefer having a paycheck.  I just want to be normal again.  If I have the chance, I’m taking down the blogs too.  I won’t need to share my life because it will be normal again.

I would give anything for my life or some semblance of it back.  I don’t know how it would affect my Christianity or how it would affect my relationships with people, but I want that normalcy back.  Whatever that is.

If you have made it this far, congratulations!  I can barely survive the ramblings of my own brain and yet here we are.  This is the very reason I try not to think about any of this stuff.  I have a thousand feelings that I can’t seem to resolve.  I know my life will never be the same, but I can’t imagine anything else and that scares me.  Feeling like I will always be forced to settle for a life that can never measure up to my dreams takes the wind out of my sails.  I will settle for whatever life gives me because in the end I am thankful for every ability that can still be redeemed.

This is one of those things that I work through in therapy.  This is why I recommend therapy so often.  Having a chronic condition in your body affects your mind.  It’s good to talk these feelings out with someone because they are valid and should be recognized and acknowledged.  Life is hard but with a good support system we can get through.  It will involve some tears and some effort, but we each have the ability to rise above and make the best of whatever situation we are in.  I hope you have people around you who listen to you and if not, find some.  You are worth having your story heard and getting support to get through life’s tough times. It’s a hard road, but we can do it!!

The Monkey Power

There is so much that goes on in the life of someone with a chronic illness or a disability.  There is the normal life stuff plus the added bonus of whatever malady is mingling with my body.  If your situation is like mine then there is a period of time that involves a lot of adjustment and can be extremely difficult.  The fact that I stopped working really weighed heavy on me after my initial recovery from surgery because something was still going on and I had too much free time to think about how horrible my life felt and how I would never be able to be what I wanted to be.

This period of time was difficult for many reasons, but mostly because I was not used to feeling victimized by my own body and answers were impossible to come by.  That is when I truly learned that I have to advocate for myself all of the time.  I have always stood up for myself, but rarely would I argue with a doctor; someone I consider to be a learned professional.  With my family by my side, I began questioning doctors, I changed my PCP, and I started taking the lead at my doctor visits.  I come in with an agenda, questions, and medical studies if I really have a point to make.

My change of attitude led to the doctors listening to me and to things getting done.  I got the sleep study and all of the exams and tests.  Now I am at the brain center here and I am receiving some top medical love.  I advocated my way to the doctors I need to see.  However, it took over a year, so please be patient.

In the meantime, I was introduced to the unite@night walk that Chiari and Syringomyelia Foundation (CSF) have each year and I volunteered to be the chair for the walk for 2016.  IT WAS SO STRESSFUL!  I loved it!  While it wasn’t huge, I was able to get some folks there.  I am again the chair and one week out (at the time of writing) from my second walk for CSF with way more confidence than I had last year.  All of my goals are a little larger and we are getting there!!

The more important thing is that this is giving me a platform to stand on and spread awareness about something that is so important to me.  It feels like I talk about Chiari every time I leave my house and that feels great because people need to be aware that it exists.  This also gives each of my doctors a glimpse of the life of a Chiari patient and so I am spreading awareness through the medical community.

It breaks my heart to know that there are people out there with the condition that I have and they are suffering because their doctor won’t order a simple MRI or add up all of their symptoms so they just live in misery.  I believe Chiari takes an average of 5-8 years to properly diagnose because it is frequently misdiagnosed (prolly need to look up that stat and see if it has changed).  This is why advocacy and awareness in the medical community is crucial.

Even if your struggle is not the same as mine, think about becoming more outspoken about it because people need to know the we are humans who are differently-abled in whatever way but that doesn’t mean we should be treated differently or poorly.  Use your intimate knowledge of being deaf or in a wheelchair or in constant pain to educate someone who may not understand your condition.  Of course not everyone is going to listen or care, but most people are surprisingly attentive when I explain Chiari and I usually only have to list a few facts for them to get started asking questions.  Please, if someone asks a question that seems obviously dumb, answer it anyway as best you can.

Those of us who are comfortable speaking up are ambassadors to the world for our conditions and it is up to us to get the word out to make it easier for those coming behind us.  We want to get people interested in funding research or going into the medical field to become researchers to help us find a cure, a treatment, a medication, a device, or whatever can help with restoring normalcy and autonomy to people’s lives.

Advocate for your children when they are in school so they can get the best education.  Advocate for homeless vets, abused pets, environmental issues, or whatever is close to your heart.  Not only will you be able to fill some free time that might be spent “plotting”, but you will be starting the change that you wish to see and should you keep at it, you will see results.

Most importantly, you find a sense of purpose in a place where you previously felt helpless and that is an amazing feeling.  Empowerment is a tool we all need to learn to pick up and use to our advantage because it will help us see the changes we desire.