Monkey Giving MonkeySis a MonkeyBoo

The past few years have been quite interesting.  I got into a car accident, got brain surgery, and had my whole world turned upside down.  Thankfully, I have had a great support system around me and lots of therapy.  However, anytime something is happening to a parent, the silent sufferer is the child.

I am not sure when it dawned on me that something was wrong.  It is extremely difficult to think about anything coming out of that type of surgery.  I spent 8 weeks on a walker.  I had to be cared for and watched.  My daughter however, lost a mother who was once extremely present and attentive in her life.  I wouldn’t understand for a couple of years how deeply this affected her.

Children we never on my life’s to-do list, so when I discovered I was pregnant I was devastated.  However, I realized that I did not take proper precautions and after some back and forth (it’s OWN blog post for another day) I decided to carry my child to term and then decided to keep her.  I don’t think people realize these are all choices we make.  Most people who want children gleefully run wild with this, but I was very thoughtful and deliberate in making my decisions because I knew that I am not the type to go back on a choice I have finalized in my heart.

I am the only parent on her birth certificate.  It has been a heavy burden that my family has always helped me bear.  I have worked multiple jobs, gone to school, and we have always been blessed with a place to live and food to eat.  I have always tried to do what was best for her and her future.

Now my medical issues are progressing and I am deteriorating cognitively.  I am blessed with high enough intelligence that it will be a while before I fall below average (says the neuro) and if we can stop the seizures we may be able to stop further deterioration and work on rebuilding lost or impaired skills.

None of this means anything to my teenage daughter who has basically lost her mother and got a shameless, broken replacement in her place.  She doesn’t want to talk to me about her feelings because she doesn’t want to hurt my feelings.  Then she dropped the bomb.

Living with me was hard and making her not want to exist.

What do you do with that as a parent? Obviously this is rhetorical because I am going to do what is best for her.  Yesterday I signed the final guardianship paperwork for my sister to take full legal responsibility for my daughter and anything concerning her welfare.  I am letting my child go so she no longer has to listen to me vomit at night or watch me suffer all day.  Her words have branded my heart.  I started vomiting outside.  Then I sent her to my sister.  I need to be able to get through my illness and my little lady needs to be the child again as she doesn’t have much longer.

Of course we still hang out and text and call, she is my MonkeyBoo.  The real joy is knowing that she is not stressed out and hiding in her room or having a nasty attitude.  I am able to use the bathroom whenever I need to and I can spend my time with her making good memories instead of being police mom.  I think that this will benefit our whole family and these are the reasons that I am willing to give up a responsibility that I hold so dear.

Chronic illness and pain can change the dynamic of a household.  This is why having a support system BEFORE you get sick is important, but if you have to gather one, put one together of people who are willing to go to the wall and that you trust with your child and finances.  As a family, we are still learning and making mistakes along the way, but we are here for each other.  As usual, when I need my sister to step up to the plate, she hits a grand slam.

On the plus side, my daughter now officially has two parents (kinda).

It will always be difficult, but be prepared to make difficult decisions during difficult times.  DO NOT rely on your feelings to make the best choice.  In fact, they tend to lead to selfish decisions that don’t take anyone but you into consideration.  Kids need their parents, but when the parents need to have time, it is unhealthy to force the kids to be in a situation that is blowing up because a parent is sick and there is no peace in the house.  That makes anxious children who cannot see the point of living and that is dangerous.

Be a parent, not a lamprey.  If being away from you for a while will benefit the child, then benefit your child.  It is what we do as parents.  We suffer if it means a better chance for their future.  It isn’t the end of the world, in many cases they can be close enough to see often.  Technology allows longer distance connections to be made.  Often, once a diagnosis and treatment plan that works is found, life can get back to normal!  Guardianship can then be rescinded and lil nugget can come home.

Of course I make no promises, but I only recommend checking your reasons for doing or not doing something when your child is clearly having a hard time with the household circumstances concerning a suffering parent.

I wish you the best and remember that you know yourself and your child.  Listen to your brain and maybe a trusted person.  Whatever decision you make, you are completely within your right as a parent and if you think is for the best, then you have tried to make the best decision and there is no shame in that.  Even the best laid plans can be foiled and the worst work out better than expected.  May you have the faith you need to make the choices you must make, even if it hurts.

Holiday Monkey

This time of year is when we tend to reflect on how thankful we are for things that we have, even though we should be doing that all year, right?  I am going into the holiday season with therapies and doctor appointments and lawyers and all kinds of wildness!

I must admit, I have no idea how I’m going to handle the rest of the holiday season.  I made it through Halloween, which I have never been fond of.  Like, just go buy candy.  anyway, once that was over, all of the Christmas stuff came out with some turkey stuff here and there!  However, for me there is is very special day stuck off in there.  The day celebrating the birth of my wonderful daughter.  I actually made it through her Sweet 16 party AND made it to church the next day!  Seriously, I had so much fun!

Now, we have a play that everyone in my family is somehow involved in, then right after that we have to prepare for the church’s Thanksgiving dinner which usually has us there from like 9am to 6pm.  It is a great way for people who don’t have family, or only have a couple of people, or can’t cook, or whatever can come together and eat and sing and fellowship.  We don’t turn people away.  We take food to those who can’t drive or are sick or can’t leave for whatever reason.  We take food out to the homeless.  We feed as many people as we can and it is always such a success.  We found that people preferred this to getting a basket of food they have to cook and may not have access to everything they need.  Plus the more, the merrier!

After turkey day is the worst, three weeks of Christmas parties, luncheons, dinners, and secret santas.  I usually hide out during this time of year because it is just too much.  because just when you think it is over, there is the Christmas program at church which takes weeks of practice in between all of the other social gatherings.  Did I mention that everyone is having babies too?  Baby showers are my kryptonite.  At least at mine we went swimming, but I also only invited five people.  Also, why are we having baby showers on baby number two, three, or four?  Look at me ranting!  That is why I don’t do social engagements.  I often feel like they are over prepared, pretentious events where I have to pretend to have a good time.  I can’t lie that much, so I just don’t go.

Finally, when Christmas is over, there is a whole week of quiet as everyone minds their own business, then it is New Year’s Eve.  I must say, the ONE time of year I want to go to an actual party, I am never invited.  I haven’t been to one in many, many years.  The last time I kissed someone one New Year’s Eve was twenty two years ago.  I feel like, I want to bring in the year with someone I really like, maybe one day.   Until then, I just kiss my phone and celebrate with a good night’s sleep!

The Monkey Cares

At the beginning of the year I decided to make some adjustments to my eating and I came out of the beginning of the year eating way less meat than I used to and more plain veggies.  Due to medication changes, I gained all of the weight I had lost and a few extra pounds for good measure.  Then it got too hot to even go for a nightly walk.

Since I have had some strength testing I have spent a lot more time in the gym pushing myself to get fit without overdoing it and injuring myself.  I and slowly getting the pounds off, but because I incorporate weights, I can’t always rely on my weight to tell me what is going on.  So, we got a new scale that measures weight, BMI, body water, body fat, visceral fat, bone mass, BMR, and muscle mass.  Really, I pay attention mostly to water, BMI, and muscle mass.  I do look at everything else, but while my weight hasn’t gone down as much as I might like, my BMI has gone down and my muscle mass has risen.

When it comes to health, I think we all would like to fix a thing and then everything else falls into place.  Unfortunately, life doesn’t work that way and we have to be vigilant about multiple things to fix just one problem.  On the bright side, if we manage to keep up with regular maintenance on our bodies, we probably won’t have as many failures of health.  The thing is, even when we do keep up with our bodies, we run the risk of getting injured by an external force that we cannot control.  So, it’s just good to be proactive because you might need that health later on!

I am keeping myself busy taking care of myself from facemasks to fiber to dentists and it feels good to know that at the very least, I am doing what is best for me.  I faithfully drag myself to the gym almost every night to get a workout of some sort in.  I drink water like it is going out of style.

The point of all of my ramblings?  To encourage you to invest time into your health and well-being.  When you live with a chronic condition it can get easy to forget or put off skin-care or exercise and I understand that.  Ease into a routine that fits your needs and abilities.  I have used canned vegetables as weights before because they can be lighter than one pound.  Even just taking five minutes to stretch and breathe can help you care for yourself.

It doesn’t have to be big, it just has to have a start.  Then as you feel comfortable, think of ways to care for yourself, to make yourself happier with the person you see in the mirror. It takes time and it can be hard to feel OK with self-care when you feel like you are always being cared for.  I learned that I cannot live by the worth placed on me by another person; I have to value myself and treat myself as a person of worth FOR ME!

I want you to know that chronic conditions aren’t what defines us.  We define ourselves.  I implore you to look inside yourself and polish the you that is inside.  You will be amazed at how you shine a light to help others love themselves!

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.

Monkey Countdown: T minus 9 hours!

Not even a whole day left!

I have done all of my paperwork, made sure I have my important cards, printed my med list.  I am picking out clothes in my head and thinking about how I will do my hair.  I am actually more concerned that I have to oversee a memorial service.

My excitement is running pretty high.  I hope I sleep well tonight.  I hope my doctor is nice.  I need to eat in the morning.  Which earrings do I wear?  The thoughts and questions swirling in my head aren’t frightening at this point, they just make me wish tomorrow was here already.

At the beginning of this writing experiment 47 days ago I was hoping to deal with my anxieties related to going to the clinic.  I’m not going to this type of place because I feel like it, I had to be referred and they chose to accept me as a patient.  Being “chosen” isn’t necessarily the greatest thing in this case except I finally get to see more specialized doctors.  It means that something my neurosurgeon, neurologist, and neuropsychologist can’t figure out is going on with me and it’s beyond their scope of specialization.  That means something is WRONG WITH MY BRAIN!

However, I think the experiment was a success.  Through writing about my specific anxieties and fears I have been able to address them with a more realistic view and see where I may be overthinking or being worried about something that isn’t probable.  In my head things seem realistic, but looking at them helped me to see that if someone else was telling me this I would tell them that they are overthinking it and tell them why I felt that way.  So, being able to do that to myself was very rewarding.  In a way I feel like I have validated myself and that is important.  Recognize your own feelings and accept them, but if they are unhealthy then take the steps to get healthier in that area.

I am a super-anxious person.  The past couple of years have been hard and painful and this makes my anxiety into an ugly monster and I feel like the real me disappears and there is just a shell of me left, waiting to explode.  Learning that there is a tool I can use to help me with a problem I have suffered from for years generates so much hope in my life.  Even if they say I have something bad, I can enjoy life with hope.  This has helped me realize that I am not my diagnosis.  I always can do my best, even if I can’t do what I used to do.

Most importantly, I am just proud of myself for only missing two or three days out of this whole time and for being candid about my feelings.  It is much easier to tell ya’ll about my colon than about my feelings.  However, I believe in transparency and I hope that my openness can someday be seen my someone who needed to read what I wrote.  I had a hard time finding good blogs about what people actually went through daily, like the real life things.  Like how does it affect the personal stuff?  Am I normal?  I had questions.  I decided that I would begin my own blog and that I would show the world my warts and all so that someone else out there wouldn’t feel so lonely.

I hope this little series of writings helps someone at some point.  They have certainly helped me and I can’t wait to offer a report tomorrow about the visit and how it went.  I appreciate my followers, we are few, but we are awesome!  I hope to be able to update you soon after my visit, but if I don’t, it is because I am a lil busy, but I will have it published tomorrow.  Thanks for sharing this journey with me!

The Monkey And The Ritual

Anytime I get a bad headache I have a ritual that I go through, mostly because I am hoping that there is some other cause to the headache.  The first thing I do is I make sure I have been taking my meds.  Abruptly starting or stopping some medications can cause you to have a headache.  This has NEVER been the cause.

The next logical step is coffee.  There aren’t many days in my life spent without a cup of joe, so sometimes I have to make sure that not only have I had my coffee, I have had enough of it to power a small coastal city for a week.  Too much coffee can not be had without also hydrating constantly with water.  Coffee will do terrible things to you, including dehydrate you, and dehydration can cause a nasty headache!!  So throughout the day I tend to drink water with and between my other drinks.  I keep it with me when I sleep.  I drink a glass before bed.  I am also very fond of sparkling water.

It has never been coffee (I have never really been without it) and only dehydration the first summer after my decompression.  I learned real quick that a little extra is ok and always have a bottle in your purse.

When dehydration is not the problem either, I turn my sights to my tummy.  Have I eaten in the past four to six hours?  Was it substantial?  Will I feel better after a piece of cheese?  I get hangry and hunger will give me a headache, but it is usually a very specific type of headache that happens in the front as opposed to the back of my head.  Still, I will eat a sandwich if I think it may help!

None of those things?  Is it that time of the month?  Even though I am on Depo, I still go through hormone changes and sometimes that includes a headache.  However, it is usually accompanied by hating everyone, thinking everything is stupid, wanting to set the world on fire, and a general malaise.

Still no?  Well, probably working with an occipital headache that can be affected by the weather, how I sleep, and I honestly don’t even know what else.  Sometimes I can be having a perfectly normal day and then BAM!  I feel like I have been hit in the head with a steel bat and things stop working well.  I can’t hear the same.  I can’t keep my balance, I have trouble writing or speaking.  The headache has come and brought it’s terrible friends with it.

I hope that I will get an answer at the Cleveland Clinic.  I have waited so long to see these doctors and maybe they can tell me where the headaches are coming from.