Monkey Deprivation

I have had a few occasions that warranted a hospitalization, however I was usually sedated in some way.  I was at the hospital for five days after having my daughter because my heart wouldn’t return to normal.  Brain surgery was the most significant stay, but I was heavily medicated as the pain is absolutely fantastic (in a not-so-good kind of way).  Being on the epilepsy ward meant less medication than normal and it was quite the experience.

I was skeptical that they would find anything because I had been trying to stay calm and still for a month so that these seizures weren’t happening.  They thrive on making seizures happen, so we started with the light box thing.  Basically, I sit with my eyes closed, and a technician puts a little LED screen in front of my eyes.  Then, she cycled through light patterns in ten second increments with ten second rests between and each time the light was slower until the last time when it was at the highest speed again.

When that was over, she left and we decided on sleep deprivation to help get some results.  I suppose that is the real topic of this post.  I have lived a life where I barely slept and it seemed like everything was fine, but under this setting, it feels like medical torture.  IT IS NOT TORTURE!!

The first day we had stayed up until three in the morning watching movies at the hotel, so we went in sleep deprived.  After getting the electrodes placed and the light test, it was pretty much keeping awake while enduring many neurological assessments and vital checks.

Staying awake without really using up energy gave me a lot of time to think.  There were times that my mom was able to get out and I was in the room alone for a bit and by day three I was begging my body to have a seizure.  Really, having a seizure is the ticket home!  It may seem weird, but the whole point of being there is so that they can record your seizures and diagnose them.

Even after having a couple of seizures, they wanted more for a clearer diagnosis.  By day five I was ready to induce a seizure by hitting my head against a wall.  At this point, time did not matter.  My stomach was wrecked, I was ready to go home, and I was tired of having to ask EVERY SINGLE TIME I HAD TO GO TO THE RESTROOM as I was hooked up to a monitor and sleep deprived.

Looking back, I spent a lot of time trying to be in the moment.  I did cross stitch.  I read and played games on my phone.  I read.  I watched cartoons.  Filling twenty hours is quite the task after day three.  That is when my dark side came out and tried to find ways to secretly take naps.  The thing is, I am hooked up to monitors and my room is videoed, so I always had someone to come wake me up and deprive me of sweet, sweet rest.

To those who really know me, it is no secret the depths I will go to to get what I want or feel I need.  I can justify almost anything and what a dangerous power to wield.  Luckily, I don’t have that mean streak I had when I was younger, so I have spent the past two years jumping through every single medical hoop and participating in all of the dog and pony shows so that I could get myself a referral to Cleveland.

Some people tell me that they couldn’t do sleep deprivation and I can’t really understand the reluctance.  I walked through a medical gauntlet before I ever got on a plane and after a couple biopsies, countless images, the “oscopies”, the manometry, poking, prodding, scraping, collecting, sampling, and everything else, five days of sleep deprivation is like a weird vacation to top off a very wild few years.

Having my mom with me was also fun because she stayed up half the night being “deprived with me” then went swimming during the day and took a nap!  It was a comfort being there with her.  She is one of the few people who understands what makes me tick and how to keep me encouraged.  Honestly, I don’t think I could have gone on this type of trip without her being there as she would want to a full status update every twenty minutes and I can’t say I blame her.  I would want to be there for my daughter if she were in my position and I am glad to just be home with her now!

My largest lesson from sleep deprivation is that it turns time into a fairly useless construct.  Things had to happen at certain times, like food delivery, regular medical checks, and doctor rounds.  Yet I personally had no responsibility to time except a time to go to sleep and wake up.  Being on the opposite coast was also a hurdle because I was up at seven in the morning, but it was three in the morning in Las Vegas.  My people are not a people of the morning.  I was able to have a few conversations, but really, the time difference made things a little difficult.   Later in the day my mom would be back and we would spend time talking and having dinner.

In the end, we got a diagnosis.  We left the hospital in the morning and we made it home that evening.  I didn’t sleep on the plane.  I got home and the reality of my trip sets in as my body returns to normal.  Being unable to really bend and move around freely tends to slow the gut.  My gut is already unhappy.  I was miserable for about my first four days home as my body went crazy.  I was very dehydrated even though I drank plenty of water.  My hair was gross, so it was conditioned for a day.  My skin just stays angry anyway.  Most notable is the deep need for sleep.  So much sleep.  Uninterrupted sleep.  It is difficult to not feel guilty for the amount of sleep I get in a day.  I know that I don’t have much to do, but I am tired in an unreal way.

As the trip slips further back into my mind and the days pass, my sleeping is normalizing.  I still need a nap most days, but I am trying to build stamina and I suppose it will take time.  Being sleep deprived helped me realize the signed of extreme fatigue (awful dad jokes and wild mood swings) and it reinforced how important it is to get sleep.  Even if extra sleep is needed.  I require a nap most days.  If I don’t get it I tend to be moody and angry.

The most surprising part pf the trip?  Mom and I were not at each other’s throats and she has become a master at diffusing my tantrums.  It is this type of experience that really allows her to shine in her role as parent and caregiver.  While she didn’t have to do the main care giving, she gently woke me up in the middle of the night when I had to have things done,  she made sure I had things to do and some small comforts like sparkling water.  She was selfless and still listened to me whine.  She shows me that I still have a lot to learn in life and that I am still worth spend time with to teach those things.

If you find yourself in a long term and unpleasant medical situation, keep hope alive because that makes it SO much easier to go through the poking and prodding and testing.  Even if you don’t get the answer, if they were even able to rule something out then you have narrowed your focus.

Chronic illness is a long-term issue that often involves multiple issues and is a pain in the butt to deal with.  This is one of the things that MUST be accepted!  Time will often be involved in diagnosing and also in treating.  Chances are, if it is “chronic” it is going to be hanging out for a while and acceptance will become crucial to move forward in life in a healthy way.  There will probably be painful procedures.  Ones that don’t give you any type of useful information.  There will be imaging that shows nothing.  Tests that are normal.

I stand here, with a diagnosis, telling you that after almost three years, I have answers to what is happening in my head and body besides the Chiari Malformation.  Is this everything?  I don’t know.  It is something that I will spend time working on treatment and therapy with my medical team and see what all gets resolved before just pressing forward.  Having this diagnosis could be the key to a number of my current medical issues.  Maybe it is not.  This is why it is imperative to accept that help takes time and desire, otherwise nothing will get any better.  Neurological problems are difficult when compounded with trauma.  Give yourself time.  Give yourself space to express yourself in multiple ways.  Let your support group know what is going on in your life and I always advocate for therapy.  There is no shame in speaking to someone about what has gone on in your life if it has reemerged and is currently affecting you.

Therapy.

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.

The Unlicensed Monkey

I knew it was coming.  I knew back in August when it was suggested that I don’t drive until we figured out what was going on.  After six months of seizures, I had one in the neurologist’s office.  It confirmed a lot of our suspicions.

I was the one who printed out the forms from the DMV for the handicap placard and the medical form to evaluate my ability to drive.  When we left the office, it was about a week before I was told that the paperwork had been sent to Carson City and I was allowed to have a copy.  At the time I did not ask how the forms were filled out.

The last time I drove was in August and I voluntarily gave up driving because I knew it would be unsafe.  I spent six months wondering if I will ever be able to take my last road trip or if I took it already.  I tried to not worry because I have very little control over the situation.  So, life went about at its usual pace and I just let it simmer in the back of my mind.

Last week, I hobbled myself out to the mailbox and as soon as I opened the little door, I could see the distinctive white envelope with a blue corner and for every thing they send, the corner also has a strip of another color like red for license violations and white for renewals (this is just an example, I don’t have THAT kind of free time, guys!).  There was a color I had never seen before; pink.  I grabbed all of the mail, locked the box and hilariously tried to fumble through the mail while walking with a shillelagh and a weak left side.

When I got in the house I plopped the mail on the ironing board, locked the door (to keep the creeps out and the weirdos in), and I quickly grabbed the envelope and my heart sank as I realized that this envelop held no placards.  I slowly opened the letter and read the letter.  It acknowledged how wonderful it is to have the privilege to drive in the state of Nevada and how much I must enjoy it. They got me there!  I SURE LOVE driving!  Then the tone changed and it mentioned that while it may be unpleasant, I need to turn in my license due to medical conditions that may make it unsafe for me to drive.  Then it mentions that while it is inconvenient, if I don’t do it my license will be revoked before sliding into the cheerful possibility that once the grey skies of my health clear up, I will be able to get my license back once the doctor approves and submits paperwork.

I cried.  Not excessively (because I am somehow steeped in toxic masculinity practices) but I mourned the loss of one of my most cherished activities.  I have driven all over the place and had plans to go to more places.  Then I packed up the letter and took it to church with me.  I gave it to my stepdad and cried more during service.  A piece of my independence has been legally suspended due to no fault of my own but the single action of another person on a random day several years earlier.

Today, my license was mailed to Carson City where it will reside until I can drive again.  For now, this is no longer a concern.  I think not diving voluntarily made it a little easy because it wasn’t just taken from me.  I don’t think people understand how traumatizing it is to be “normal” one day then have a list of life restrictions the next.  For me, personally, my memory loss makes the whole thing more absurd to imagine.  It seems like I was driving yesterday.  Anything that I can remember seems like it JUST happened.

I expect my daughter to be driving soon enough.  I always thought I would be the one to teach her, but I am no longer a valid driver.  I can barely get up some days.  At this point I am thankful to be able to walk, even if I have to use the cane everyday.  Driving may or may not come back.

People ask me how I can remain positive through these times.  I go back to my toxic masculinity trait (inherited from my dad’s side, of course) and I try to not put all of my sorrow and grief out for the world to see because I am fighting a private battle.

“But, Michelle, you write an extremely personal blog!” I hear someone saying.

Of course, because I want to pull back the veil on the personal dealings of someone with chronic illness, however I choose not to clothe myself in misery because I know that I am not the only person in the world or in my circle who deals with issues.  We help keep each other encouraged.  I am a minister at church, I am expected to show decorum at most times (sometimes I go a little ham, though) and I believe a lot of that is showing people that I will not allow my condition to let me treat people poorly or sulk for attention.  I actually prefer that the attention be off of me because I am just a servant in the church.

When I go home, I can open up to my family about my feelings and so forth.  I have multiple therapists that I talk to about what I am going through.  I try to find creative outlets for myself that allow me to express my negative feelings in a positive way.  That is really why losing my license hurts.  I love cooking for people and dropping food off to them when they don’t feel well.  Volunteering to cook and feed people in other places was one way I worked to find joy in the abilities I that I had left.  Now even cooking for my family is difficult.  Still, I know my way around a kitchen and I just take my time.

The biggest benefit in my opinion is that I will never be at-fault in an accident, also I love looking out the window and enjoying the view of the city and out lovely mountains.  Las Vegas has great mountains and canyons.  The city itself is kinda interesting from a distance.

Losing something cherished doesn’t mean there will never be meaning in that part of life.  I think it is up to us to discover how to get the experience when we are restricted.  I am looking at traveling the country by railway.  I don’t have to drive, I can see all of the views, I can have my own room, and experience something that has never crossed my mind in a serious manner.  I look forward to my first trip and you know I will blog about it.

I hope you find peace with your body.

Monkey Thanks: 25

It has been a tough year, but there is a gentleman at church who is an usher in the balcony where I like to sit.  He is an older guy, at this point he is like an uncle.  I met him after my brain surgery and the circumstances of how we met is very foggy to me.

I do remember we were selling pillows, and on each pillow we pin a little card that tells about why the pillow was invented and then a little of my own story and how to find me on social media.  Then it has my name and a signature.  I sign E. Michelle and it is also what I have on my nametag for church,

So, he saw my nametag one day and finally put it all together that I was the person the pillows were made for and he introduced himself and said he bought a pillow for his daughter in Abu Dhabi…who also happens to go by E. Michelle and for the same reason that I do!  People can’t pronounce our first names!

I am thankful for him because he always has a smile and encouragement for me when I see him.  He is keen enough to know when I am smiling through a rough day and I appreciate that he cares enough to even take notice.  I appreciate that he prays for me and that he has supported my own cause to raise money for Chiari Research.  People like him are wonderful examples and support for my own generation as our kids grow up and we grow up even more.  I look forward to seeing his smiling face every Sunday and Wednesday.  Honestly, there aren’t too many people I can say that about enthusiastically!  This year has shown me a lot of the people who might be seen from the outside as background characters on my stage of life, but they often are the ones who are consistent, loving, and freely give wisdom.

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!

Monkey Thanks: 10 & 11

Occupying two spots on my list is the most important person in my life right now, my MonkeyBoo daughter.  I never wanted to have kids and it was never in my plan to become a mother, but life happened and I ended up having 6 pounds and 8 ounces of little human and life began to change.

She was born during the time that we were in the middle of trials concerning my brother’s murder and for my family was a welcome distraction.  I was able to take a year off of working and just hang out with her because I had a difficult time bonding after Tony died.

I had her at the end of a Sunday night during a series of tornadoes in the Nashville area.  I remember that by the time she was born, 11 people had died in the weather carnage and I was only a mom for like, 15 minutes before the night rolled over to the next day, so technically I began mothering on the 11th.

I had a very high risk pregnancy and due to complications with my blood pressure, I had to stay in the hospital for five days.  Unfortunately because of the medicine I was on, I was not able to really hold her or be with her unless a nurse or someone over the age of 18 was in the room.  Since I didn’t allow visitors except my dad and Meg, I didn’t get to see her much, but when I did I remember thinking what a remarkable job the body does in creating, protecting, and producing a baby.  She was perfect, and as she grew she showed her mischievous side.

She turned 16 yesterday and is officially a ‘Young Lady’ and while I cherish out past together, she has taught me to look forward to the future because plans be damned, something way more interesting is going to happen!  She is resilient, artistic, fashionable, and is developing a great sense of humor.  She is the reason I fight my body and go forward with wild medical treatments.  I want to be with her and I want her to have me for as long as she needs me.

I am proud to be the mother of such a wonderful girl and I can’t wait to see how she makes her imprint on the world.   She gave me the title ‘Mom’ and she occupies a double portion in my heart, as the firstborn and the last.

The Passenger Monkey

I had a visit with the neurologist, and in another post I will get more in-depth about that visit, but know this, it was disappointing for everyone involved.  I just want to focus on one area of my disappointment and that is that I am still not allowed to drive.  For at least another four months.

I know this probably sounds like a minor inconvenience and I suppose in most ways it is.  I often am in a vehicle with another capable driver, so it’s not like THAT much is different…except I am now permanently a passenger.  I have a lot of appointments and now someone has to be available to take me.  Since I haven’t had my disability hearing, I have no income and my family takes care of me, so I really hate adding another thing to their plate.  Luckily, my family is flexible and understanding that I am doing everything I can to help.

When I want to get something in the middle of the night, I just can’t.  I am not even allowed to walk to the store by myself.  I find it to be an annoying restriction but one that is important for keeping us all safe.  Still, I don’t like people taking things from me that I enjoy.

This is where my biggest issue is.  I LOVE to drive.  I have been driving since February 24, 1997 when I got my permit.  Six months later I had my licence.  Then my car.  Freedom!  I love the freeways!  I would take the long way just to feel the breeze and see the mountains and the valley.  I have driven across the country through snow, fog, rain, hail, dust, ice, heat.  I have had to be towed from the middle of nowhere and wait for a rim to be delivered to nowhere while I ate bologna sandwiches with mechanics in the dead of winter.  I went off-roading at Death Valley National Park.  I drove along the California coastline.  These are all precious memories that I thought would always be added to.  For now, I will have to close this chest and open one that allows for a different type of adventure.

Still I am going to miss being the captain of my ship.  This is one of the issues that seems really small, but something I have done for over half of my life has been taken from me. I have been stripped of a portion of independence that I loved dearly.  I had one last road trip planned, but I will have to change that to some other type of getaway.

Why not just let someone else drive?  Simple, I enjoy solo travel.  I like being able to do what I want without having to listen to another person.  I enjoy the sound of the wind over snoring or conversation.  I DO NOT like sharing hotel accommodations and I have no problem spending lavishly on myself (within a set budget for a vacation) and I need ME time.  I do not like keeping up with other people.  I know this all sounds horrible, but trust me, ALL of my vacations have been awesome because I got to do what I wanted.

Now, I probably won’t be able to travel alone as my family would never approve of that.  I can enjoy a “trip” with another person.  Where we plan stuff to do and have an itinerary, but that is not what I like.  I like to stay in my hotel room and relax.  Or go to the pool and relax.  Or have lunch and relax.  The key to relaxing (in MY LIFE) is to not involve other people.  They talk.  They want to split bills.  They want to share a room.  Just thinking about it is less than pleasurable.

On the more practical side, I can’t even drive my daughter to school.  I can’t drive myself to church, so someone has to come home and pick me up.  If I forgot something at the store, I can’t just run and get it.

Right now it is still a shock, but I know it will just take some time before it becomes my new normal.  I think what most people fail to see is that I just feel like I am losing little parts of my past normalcy that I desperately try to cling to.  I have to mourn every loss.  Every little thing that I cannot do anymore has to have a proper resolution so that I am not hanging onto it.  Letting go allows me to embrace something new.

Never give up on the hope when it is dark and things seem to be going awry.  I can promise you that if you push through that you will discover strengths and talents that you never knew you had in you.  That is NOT to say that things will get easier, but your wisdom and tolerance will increase and eventually you move with the process…even when you aren’t thrilled with it.

Family and support, be kind because you may not know how it feels to have tiny portions of yourself taken away or changed and unfamiliar.  It can make life a frightening experience and we need to know that we are in a good place with good people around us who love us and will give us time and understanding.

Thank you for those who stick with us and don’t question our moments, they just live in them with us.  Ya’ll the real MVPs.

Monkey Thanks: 09

Sometimes life offers you multiple parents (often through circumstances that really suck, but whatever, right?) and as a teen Meg came into my life and was always just like a mother then I was in Tennessee and as time went on, out relationship got closer.

She is the one who went with me to my lamaze classes when I was pregnant with my daughter and was also present when she was born.  She is just a part of the family and I am sure that somewhere our DNA matches.

I usually get to see her once or twice a year when she comes out to visit and I look forward to the next time she is here.  Unfortunately, I am terrible with keeping up with people on the regular basis because time means very little to me, but we do text for holidays and birthdays and hopefully I will be able to see her soon.

I know today seems kinda phoned in, I am just battling with a pain that is spreading and making me feel pretty awful.  So, I love you, Meg!!

Monkey Thanks: 05

My dad has always been a hero of sorts.  We haven’t always had the greatest relationship and we don’t always see eye to eye, but he is extremely intelligent and is wonderful to have a wide range of conversations with.

He lives out of state, but he always comes to visit once or twice a year and we get the opportunity to catch up and eat some good food.  He came out a few months ago with family and we had a great brunch.

When I told him that I had to have brain surgery and I was scared, he reassured me that he would be there for me and the family and he flew out the night prior to mu surgery, bought a printer, and set up an office in his hotel room so he could stay for two weeks and also work.

He was one of the people who sent us money for food, brought us food, ice, ginger ale, and spent time just hanging out.  He even got me a bicycle horn to call my sister with!  He is the one who drove me home from the hospital.

Even now, I am anxiously awaiting his visit because it is getting close to my daughter’s birthday!  Even if he can’t make it out on time, he is sure to show her a great time while he is here.

Mostly, I am thankful that he is there for me when I need him and he sends very funny bacon memes.

Monkey Support System

I have such a wonderful family.  I always knew they were cool, but I have seen how every member of my family has sacrificed something to take care of me,  Many sacrifices are long term and continual.  Sometimes a really fun thing has to be skipped on my account, but they are champions for dealing with it the way they do.  I know a lot of people who “know someone who cares for another person” but most of these people don’t see the day to day dealings and frustrations that families face.

Thought I was trouble before?  I am no longer allowed to drive.  In the last 7 days I have had four doctor appointments, a visit to the ER for my daughter, an allergic reaction to medication, and two pharmacy visits.  That is all stuff that my FAMILY had to drive me to!  No one complained when I frantically ran around the house needing to get my daughter to the ER to close up a laceration from a stray burr on the oven, they knew I felt helpless because I couldn’t even help my own daughter because of my health.  My stepdad hung out in the waiting room while I sat with her letting her squeeze my hand.  We went home after two, and he had to be up in 6 hours for work.

I feel unworthy of such love for me and my child, but my family shows me constantly that our love as a family will rise to any occasion and meet it head-on.  While I feel like so many things have been taken away from me, I have been given enough support to cover every loss.  I count myself blessed to have such a team of people around me who keep me going and carry me when I am too worn down.

THIS is a Support System.  It isn’t just my family, I have friends I can call, associates, and complete strangers who are willing to assist me.  Yes, I am a grown woman with a teenager, and my parents take care of me and my daughter.  I used to hate it until all of my money ran out and I could no longer give them money, or pay my own phone bill, or buy socks.  I actually ask for these things now and it has made me a much more humble person.  They could have forced me to give up my own phone bill and get on their account, but they understood how it would hurt my pride and they bit the bullet.

By NO MEANS are we rich.  We know how to be frugal.  I know how to cook from scratch which can save a good amount of money.  We save money every way we can, and we still get to go to the movies and shop, so, it’s a balance.

So, this is what breaks my heart; people who go through chronic illness or chronic pain alone or with toxic people around.  This is something I see in some friends of mine and in groups on social media.  It is close to impossible to walk away from whatever situation I find myself in if I come down with a case of unexpected neurosurgery or incapacitating pain.

Some people get SSI or SSDI right off the bat, but many of us wait longer.  It has been over two years since I first filed.  I am waiting for a hearing date.  Meanwhile I am making no income.  So, I know there are others out there like me who find that the resources run dry.  I assume only a portion of them have the luxury of moving back home.  Some of the people I know who chose this option deal with family who almost feel obligated to let them stay but are not welcoming at all.  A few are acrimonious.

A few have spouses.  Some of those spouses try their best to understand and sympathize the issues associated with the chronic life.  However, some spouses are a stain on humanity and do not believe or tolerate the disability.  So, you have to live in the slim space of being sick without it bothering the person who finances your life and medicine.

There are some who have nowhere to go.  They lose everything in their life, they lose themselves in the pain, and life can take some weird or even dangerous turns at this point.  The streets are no place for anyone.

This all begs the question, “what do you do about it?”

I mull this over every time I go to the doctor and leave with no answers.  I consider it when I am in the MRI housing.  I ponder it when I am on the phone for three hours trying to find a referral that got stuck in Ohio and was not sent back to Las Vegas.  I marinate in it when I am in the ER and I see people there alone, while I always have one or two people with me,

I look at my church as an example in this area.  One of us from the Helps ministry will be there with you at the hospital.  Usually for as long as it takes.  Might have to sleep in ICU for five nights.  Might have to go to another state and care for someone.  You might have to go be there during the dying process.  you may have to feed someone who is injured or otherwise incapacitated.  There is this shared responsibility for the welfare of each other that I don’t know if it exists in other churches or other types of communities…but it should.

Las Vegas has a lot of people who come out without family and they need support in their lives.  When things happen to them, one of us will stay with them and someone else will help arrange for family to get here and get to the hospital.  If I  have to stay overnight with someone, there are shifts of people who bring me food or whatever I need.  It is beautiful to watch such a large response of love toward a single member of the church because we are all that important.  Everyone gets that treatment, even new members, and at times non-members.  People deserve kindness.

I challenge you to be more supportive of the people in your life that are going through something you don’t understand.  Most of the time all you can do is listen and bring them things, and often that is what they need.  They need to be heard and have their feelings (WHATEVER THEY ARE) validated so that they know that someone cares.  Sometimes that means helping them meet a need.  I know that no one wants to part with their money, but sometimes people need help with simple things like toilet paper because their meds cost went up.

The best part about a good support group is that EVERYONE is willing to give as much as they can when needed, even if everyone doesn’t have a lot of money.  Supporters give time, attention, encouragement, and friendship as well as any kind of financial help.  There are some people in my circle that are well off and all I can do is make them soup when they get sick.  I can’t throw money at the flu just like they can’t.  I will sit and listen.  Talk if conversated with and leave promptly because supporters also understand that people need rest to recover.

Supporters understand when you look like you survived a tornado and are forgiving of a short temper or a poorly thought-out comment.  This of course NEVER implies that one can treat supporters like servants or pests, rather, this is the occasional slip of tongue which is also apologized for.

The best part is that a good support system offers cheerleaders for every victory as well as a soft place to land after a loss.  A good support system is woven through love and experience and you can only be in a good support group if you are a good member.  Be the change you wish to see (Not sure who said this; could have been me, could have been Hammurabi).