Learning To Cope

It’s been nearly two weeks since I arrived at the School for the Blind for my week of training and support.  I’d meant to write up a post earlier than this, but I’ve been a busy body all this past week.

A good thing really!

I have people asking me what kinds of things visually impaired adults do at the School for the Blind. This post, I hope, will answer some of their questions.

The School for the Blind in Grand Forks (North Dakota) is mostly geared for school-aged kids but the ND Vision Services offers quarterly week-long training sessions for adults at the school each year.

Awesome’s my humble opinion.

What types of training do they offer for adults?

Well, when you first express interest in attending, you have the option of selecting any of (or all) the following six types of training/support:

Adjustment (coping skills, therapy, etc.)

Daily Living Skills (cooking, housekeeping, organization, etc.)

Technology (learn about all types of accessibility options with computers, phones/cells, etc.)

Orientation/Mobility (cane training, learning skills of getting around at home or in the community, etc.)

Braille

Vocation/Career (what’s out there for a visually impaired person, job training, career preparation, etc.)

 

The week began at 8:30am Monday; but first, I arrived there Sunday evening where I was greeted by the House Parent, Amy.  My “room” for the week was actually an “apartment.”

My “room” at the School

The School has two “apartments” reserved for teens where they can learn Independent Living Skills. They are equipped with a full kitchen, one bedroom, full bath, living/dining room which has an extra bed and TV w/ cable. I lucked out and was assigned to one of these rooms.

Awesome.

During the week, there’s a House Parent on duty between 3 and 11pm, and then another one for the overnight hours until the instructors arrive usually around 7am.

Each week day began with breakfast at 8am held in the large kitchen/dining area where in order to get there from your room is by maneuvering through a series of thinly carpeted hallways (in my mind have always been a sort of maze with strange series of tiled, checkered-style blocks at certain sections throughout each hallway).  But this time I learned their purpose! For an individual who’s completely/mostly blind, as he/she walks with the White Cane, each block signifies there is an office or room located at that area. And in order to know which room was which is by counting the blocks. Block #3 is the Technology room, or Block #4 is where the kitchen’s at.  When you cross an extremely large block, that means you’re at an intersection where two hallways meet.

You get the idea (I hope).

At the first/initial breakfast, you’d receive your scheduled classes for the week. For this day (Monday), you’d have an instructor aiding you to each class so you’d know where it’s located.  For the rest of the week, the help to each class gradually decreased until you are independently getting around to each class, meal, and your room.

This is the ultimate goal for all the training at the School…to enable a visually impaired person to become as independent and self-reliant as possible.

There are generally three classes in the morning, and three classes in the afternoon (each session is one hour long where you meet one-on-one with the instructor) running from 8:30am until 4pm with a lunch-break at 11:45.

My schedule was as followed:

8:30 Daily Living Skills

9:30 Technology

10:45 Mobility

11:45 Lunch

1pm Adjustment

2pm Daily Living Skills

3pm Technology

I opted out of the rest while the other attendees participated in all areas.

Dinner (set up by the House Parent) usually began around 5:45pm. The rest of the evening was your own time.

The classes were great, but for me, I absolutely enjoyed the interaction with the people (both the instructors and peers).

The first time I attended here was in June 2016 where there were seven of us total. This time there were just 3 of us.

Harley was the youngest at age 26. She completely lost her vision two years prior due to diabetes. This was her first time here.

Jewel was the oldest at 53, and as local, she’s a frequent visitor. She’s in the process of losing her sight also due to diabetes.

And of course, there was me, right smacked in the middle.

The camaraderie between the three of us was awesome and inspiring.

Just what I sorely needed.

The days were intense but fast. When Friday came, I found I wasn’t really ready to head home.

I felt safe here. I felt like I mattered. And the people I hung with truly get me whereas my family struggled to do just that.

But, I’ve learned new skills, and have been introduced to new possibilities that I’m truly excited about and hope to bring to fruition soon.

 

 

 

 

 

Advertisements

First the Hill. Next the Mountain.

In about four days I will be heading in to the city to spend a week at the School for the Blind. It’s been two years since I was last there (or was it three?). I figured it was high time to had back for additional training and support.

ND Vision Services, Grand Forks

 

I’m sitting here, staring at the screen, and it sort of dawned on me that it’s been 27 years since the diagnosis that completely changed my life. I’ve spent so many years angry at myself, angry at the world, feeling sorry for myself instead of fighting back and pursuing my dreams inspite of this disease.

Regrets. Pain. Losses.

They have controlled my life for far too long.

I’m tired of my allowing this to dictate my every action (or inaction rather). I’m tired of feeling like a shut-in cut off from being able to get out there and interact with the world (instead of doing it all via internet even though that’s been really helpful).

The worst part about the past 27 years?

I allowed myself to just give up on everything.

It has taken me this long to come to this point of now wanting to get back out there, and even pursuing a few of the dreams I’d let go.

But, is it too late?

I’m not sure. What I am sure about is that sitting around at the house all day long will not get me anywhere.

So, here I go, trying to make the most of what I have left, and to see if I can finally get somewhere with my life.

School for the Blind

At the moment, I feel like I’m trying to run up a steep hill, unsure if I’ll be able to gain any kind of momentum. Will I reach the top, or will I run out of steam and have to turn back?

I am so full of fears and doubts about myself and my abilities. Yet, I know that life is precious, and time’s growing shorter by the day, I can’t allow myself to give up.

Not anymore.

I want to be someone that my son would be proud of. Someone I will no longer be ashamed of.

Sunday is the day I will head for the School. I hope to be able to update you all on what goes on during my week while there.

Fingers crossed on all accounts…

 

 

 

X Marks the Spot

Nearing the end of April, I find myself reading over the poems I’ve written for both NaPoWriMo and A to Z Challenge, and it kind of struck me how dark some of them sounded.

This must be me in some kind of funk (aka depression). The poem, Lonely, kind of nailed it on the head –

I sit at the window
And watch

As the world
Leaves me
Behind

This is exactly how I feel. Long story short, my hubby works long hours and travels out of state much of the time, and a son who’s busy with high school, sports, and hanging with his friends, so I am alone at home most of the time.

When I “retired” in 2015, I was looking forward to being home, and to be able to write without any time restraints. That same year we left the hectic city life that was Raleigh, NC and moved up to a farmstead just outside Grand Forks, it was just what I needed. I’d been battling anxiety which was steadily worsening and meds were not helping. With wide open spaces, I felt I was finally able to breathe.

Nearly four years later, anxiety is almost non-existent but depression is starting to take over my life. I mean, I am only in my 40s, and I feel I still have much to live for.

Everything that has happened to me, all the crap I went through, and the losses I’ve experienced, and they all come down to this—me, sitting at home, alone with just my laptop and nine cats.

I write, a lot. I interact with people via internet. But, I want more. I want to get back out into the world. I no longer want to hide and be left behind.

But, I am hampered with limitations of all kinds.

I don’t drive. There is public transportation but it’s limited to certain days and to certain places (none of where I’d love to go).

In the time I’ve lived here, I haven’t been able to establish any real friendships within the community (they tend to be quite “clicky” when it comes to “outsiders”).

Yet, with my hubby and son who practically can fend for themselves, I have no limit as to what I can do and where to go as far as time and availability. How do I narrow the chasm and break through to the other side?

As I sit here typing, there is a window next to the desk where I can watch birds pecking away on a pile of seeds my guys threw down weeks earlier, I am struck by how free they are to fly wherever they want yet they are limited. Limited by weather conditions and availability of food. These two determine where and when they fly. These limitations though do not seem to affect their attitude as they sing and flitter to and fro. Why? They take what they have in whatever condition things are and fly and sing anyway.

Yes, they have limitations but these do not stop them from being birds who still find ways to fly and sing to their little heart’s desire.

I want to do the same.

So, I will start with what I have and where I am at, and go from there. It’s time that I fly free regardless of my current limitations, and see where the sky leads me.

September (Therapy-In-Progress)

 

Fall is at its peak here in North Dakota.  In fact, I think it may have actually skipped the autumnal season with temps only in the mid 40s with a snowflake here and there.  Harvest’s been in full swing since end of August. Farmers are currently working on potatoes and corn; next will be sugar beet. By the end of October, harvest season will close, and then we’ll settle in for the winter months.

Living in a farming community, there’s always activity going on all around you.  I love the open, rural countryside here as well with the seemingly endless dirt roads to walk and explore.  My house (a small farmstead of 14 acres) is literally surrounded by farming fields. This year, the east, south and west fields grew wheat; while the northeast/northwest fields had potatoes.  Farmers just completed harvesting the potatoes earlier this week which meant we could go hunting!

Not for animals, but for potatoes (left behind).

My son and I each grabbed a bucket and headed out to the northeast field and walked the many rows mining for undamaged potatoes.  We ended up filling those buckets. Potatoes will be our meal staple for the next several months.

September.  One of my favorite months of the year.

A local town have put up a huge corn maze at its recreational park which we plan to check out over the weekend.  While there, I might even pick up a few pumpkins to carve.

Football. I love football whether it’s high school, college or professional. Another reason to love September. My son plays the six-man style football at his school (he’s a sophomore), and has a game tomorrow afternoon.  And it’s Homecoming to boot.

All of these are therapy for the soul. Especially for mine.

Monday Memoir: Marriage and Family Challenges

 

 

After Jay and I married, we moved to a small town near Buffalo.  There I worked in retail (cashier at a local grocery store) which was  just a short walking distance from our apartment.  I didn’t care for the job; however, I liked the fact that I could still get myself to and from work.  A year later, we moved back to the Ithaca area (in a hamlet just outside the town); the apartment we lived in was located on a bus route into Ithaca.  Handy for me 🙂   Jay worked for a short time at Cornell University, and I got a job in the banking industry (I felt I needed to get out of retail into something more “professional”).  I could have went back into the fitness/sports area, but I couldn’t find anything that wasn’t minimum wage or part-time.  I continued to run/bike when I could; but eventually gave up on them.  Jay kept fretting over me going out on my own and  insisted that he come and watch as I work out.  I became more and more limited to where I could go and such, so I just gave up altogether.

A few months later, Jay was laid off and couldn’t find work so he headed down to the Raleigh NC area to look for work.  I wasn’t too keen on the idea of moving out-of-state, and so far from my family; but if we couldn’t afford to make it then we needed to go to a place where we could.

The move enabled us to buy a home and some land (something we wouldn’t be able to do back in New York with taxes being so ridiculously high).  Those years here have been challenging to say the least.  I stayed in the banking industry; but Jay moved from one job to another (it seemed like he changed jobs once every three to four years).  I’ve wanted to make the move back to the fitness/sports industry, but the opportunity never came for me, or the transportation logistic was impossible for it to be feasible.  Our house was also far enough away from everything which made it not possible for me to come and go as I needed or wanted.  If I need to grocery shop, or anything, I relied on someone to get me there.  Even though I had my home, if anything were to happen to Jay, I’d be home-bound as a shut-in who’d be completely dependent on others.

I’m so fiercely independent, the mere thought of relying on others in order to meet my needs frustrated and scared me.  It seemed to grow worse the older I got.  This was a daily battle for me.  I’ve been left alone once when my first husband died.  A few years after we first moved down south, I nearly lost Jay.

 

 

Two months after we moved to our house, we learned I was expecting.  The pregnancy went without any issues…until the last two months.  I was almost 8-month pregnant when Jay began to have difficulty breathing.  He dropped me off at work one morning, and then went to see his doctor, Dr. Salerno.   It was mid-morning when I received a call from Dr. Salerno who calmly told me that Jay had been admitted to one of the local hospitals.   X-rays shown that there was fluid building up  around his heart-Pericarditis.  They couldn’t determine if it was bacterial or viral (if viral, he may fully recover; bacterial, he may need a heart transplant).  The immediate danger was that there was so much fluid around the heart, it had enlarged to at least twice its normal size.  They were in the process of prepping him for an emergency surgery to drain some of the fluid from the heart.  Before we hung up, she strongly recommended that I do not come to the ER until after the surgery because of the added stress since I was so far along with the pregnancy.  She would call me once Jay was out of surgery.  I said, okay.

I felt quite thankful to be working as it kept my mind from wandering too much to certain negative implications of Jay’s sudden illness.  I wasn’t completely alone in the city, thankfully, as I had my brother and his family nearby.  They picked me up after work (and once I received the “green light” from Dr. Salerno) and took me to the hospital.  Jay was in the recovery room, just coming out of being under anesthesia.  I was told that they managed to drain as much fluid as they could, but twice his heart stopped and they had to resuscitate him.  There was a hole left in his chest just under the sternum where a tube had been placed to continue to drain the fluid from the heart.  The doctors planned to aggressively treat him with various antibiotics in case the pericarditis was bacterial in hope to limit the damage to the heart while they ran multiple tests to determine whether this was truly bacterial or viral.

For the next week, we waited on the final result.  In the end, it was determined that Jay had the viral kind.  Thank goodness.

Jay remained in the hospital for a total of two weeks.  I spent some of the nights at the hospital (just so I could be near him), and other nights with my brother.  I worked every day throughout this ordeal just to keep myself from completely stressing out.  Finally, both he and I were able to go home.  Jay was quite weak so I had to help him dress, eat, and shower.  I was just thankful to have him back with me.

It wasn’t too long after he came home that I noticed my feet and hands were swollen.  The doctor kept tab of my blood pressure which stayed below the dangerous level; until my water broke two days past the due date.

After I was admitted to the hospital’s birthing center, the doctor quickly realized that I was showing signs of pre-eclampsia. My blood pressure was all over the place (soaring high then crashing and then soaring high again).  My contractions weren’t consistent as well.  They gave me an IV to control the blood pressure as well as to force the contractions.  I was not a happy camper.  Seventeen hours in, it was time to push.  I pushed for three hours but the baby couldn’t get beyond my pelvic area.  The doctor tried both the suction cup and clamps to no avail.  Then I began to hemorrhage.  By this point, I was so exhausted and barely lucid.  I remember the doctor pushing the baby back into the birthing canal, and then they literally ran me to the ER.  After that, everything went blank.

Karl was born over twenty hours after my water broke.  A beautiful, healthy boy.  Jay was there to hear him howl as they pulled him from my belly.  He told me it was the most precious sound he’d ever heard.  I woke up two hours later and then wheeled into a recovery room where I held my son for the first time.  I’d suffered severe blood loss, but they decided not to give me a blood transfusion.  My vision for the next few days were out of sync because of the blood loss.  When I looked at anything, in one eye it looked normal while in the other eye it was grossly enlarged and distorted.   By the time I was released (four days later), my vision improved.

For the next few months, Karl had two parents recovering from their hospital experiences.  Before my maternity leave ended though I learned that I lost my job with a particular bank.   During this time, I struggled as a mother and as a wife.  I grew more and more emotional (weepy), and uncontrollable anxiety seized me.  I literally felt like I was losing it.  Jay made me go to the doctor, and I was diagnosed with postpartum depression. Jay’s mother came and spent a few months with us to help me with taking care of Karl-bless her heart.  My condition slowly improved; it was even better when I was re-hired back to the same bank that previously laid me off.  I gladly accepted the offer as by this time I was quite ready to get out of the house!

To say that I was happy to see that year come to a close was a gross understatement!

 

 

 

 

Monday Memoir: Letting Go…

I never thought I’d use my Physical Education degree, but I did. I enjoyed being a fitness trainer at the YMCA. I worked there for about a year, but it became increasingly difficult to maneuver around the equipments and exercising bodies as my peripheral vision decreased. The bouts with depression increased, and I began to call in sick.

The problem was I still refused to accept the fact that I was going blind, and my waning vision angered me. I was afraid to ask for help as this would mean I had to acknowledge the fact that I had a disability, and I didn’t want people to think me as a liability. I wanted to be an asset. Not a burden.

It grew more difficult to make ends meet, so in come a room-mate…my brother. At first, it was great; but, he had his own demons to battle. Being an adopted child, he’d always sought to be accepted. He’d always felt like an outsider, I believe. While he stayed with me, I noticed he hung around with several less than favorable individuals. When they started to hang around at our apartment, I got fed up and threw them out. I told my brother, no more. Soon after, he moved out and began to date an older lady from Louisiana.

A short time later, I received an unexpected call from someone I knew from college.

Jay and I met as freshmen in college; several years before I met and married my late husband. He had a girlfriend, and I dated his best friend. After our first year in college, he needed to leave the area for a while. He came from a very broken and dysfunctional family life, and felt the need to start a new one for himself. By this time, we’re both single. He enlisted in the Navy. After boot camp, he paid me a visit. It was a brief one as he was getting ready to go over seas to Kuwait to fight in the imminent war in the gulf there. He wanted to see me one more time as they were predicting that the rate of casualties were going to be high. I remember thinking how handsome he was in the military uniform.

He survived the first Gulf War. I saw him twice afterwards before we eventually lost contact with one another. I figured he’d gone on with his life, and I met and married my husband.

Eight years later, he was calling me to ask if he could come and see me. He’d found out that I was a widow, and wanted to check up on how I was doing. Sure, I replied. I’d loved to see him again.

Then, I started to think back to that day he paid me a visit before he headed overseas. Did he like me more than just a friend?

We reunited in a mall, and ate lunch at a local restaurant. That was in early June. I can’t explain it, but things just clicked between the two of us, and the next thing I knew we were dating, and then engaged. That September, we were married.

Before the wedding, he gave me a gift. A journal. A beautiful book full of blank pages. By this time, I hadn’t written in years. Somehow, he knew I needed this. I took the journal, and started to put words in it. The more I wrote, the better I felt. I poured out all the anger and resentment on to those pages. Writing in that journal became therapeutic as it began to sooth the pain and emptiness that I’ve held on for so long.

Writing enabled me to start letting them go.

Monday Memoir: Searching For Happiness

 

After Aaron’s death, I pretty much became a hermit, retreating to my tiny, one-bedroom apartment for the next three years. I slowly withdrew from his family as their daily pain in losing a son and a brother was too painful to witness. The only thing I accomplished during this period was graduate with a B.S. in Physical Education which, as I’ve said earlier, I had no intentions of using.

 

I spent my days watching romance-comedy movies, and cried.  I didn’t give up on my running or biking though.  I bought a mountain bike and rode that all around the town.  Other times I’d ride eight miles to the nearby walking/running trail and ran three miles, and then bike back home.  Exercise was pretty much my only outlet.

At least, it was something.

By the end of the three years, I decided that I had enough of being alone.  I felt ready to return to the “world.”  I’d been living in an apartment complex for the elderly where they accepted me because of my disabilities, charging me only a small percentage of what I received in my monthly social security benefits.  But at the age of 27, I felt that I still had enough of my vision remaining to go back to work, and not rely solely on them.

So, I took a big leap of faith and moved out, and into a regular apartment in the nearby city of Ithaca.  I got two part-time jobs; one as a clerk at a video rental store, and the other as a fitness trainer at the local YMCA.  I struggled financially, but the bills still got paid and I had some food in the pantries.  I slowly weaned myself off of social security.  I regained my independence as I now was in a place where I could either take a bus or walk to pretty much anyplace I needed.

For the first time in a long time,  I felt content.  Happiness still eluded me though.  I still had the gaping hole in my heart, and my chest would ache so, especially at nights as I lied in my bed.  I couldn’t escape the loneliness.  I couldn’t escape the feeling that I was missing something.

Monday Memoir : The Darkness Continues…

 

Okay, I was partially deaf and going blind.  I’d given up on my athletic dreams.  I hadn’t written in years so why start now.  Life dealt me the bad deal.  How could it get worse than this?

The worse was yet to come.

I was declared “legally blind” by Social Security and began to receive disability benefits.  I did continue to work towards my P.E. degree even though I really had no intentions of using it.

Then, I met Aaron and fell in love.  We were married within a year after our first meeting (through a church’s function).  We had so many things in common.  We loved rock n’ roll especially the 80’s rock and early 90’s alternative music.  We both loved sports.  He was a soccer fanatic.  He not only played in various local leagues, he also coached boys’ soccer teams in the town we’d lived.   His dreams were to not only coach kids, he also wanted to be a teacher.  He began college to pursue both.

I like to say I was the good wife.  I can’t.

I was manipulative.  Verbally abusive to him.  Why?

Jealous because he was able to play soccer?  Resentful because he took me away from my family to live with his own?  Bitter because he knew exactly what he wanted to do, and was able to do them?   Envious because he made friends wherever he went and I couldn’t?

Name it, and I felt it.  Then, I punished him.

I became the psycho-bitch that mothers would warn theirs sons against.  And I hated myself for being that way.

I wanted to change.  For him.

But, it was too late.

One cold day in March, Aaron was killed in a car accident.   He was on his way to pick up our pastor to take to the hospital because he didn’t want to take the ambulance.  I decided not to go at the last-minute.  Aaron was going too fast when he lost control of the car, and crashed into a dumpster truck.   The truck struck the passenger door, and because he wasn’t wearing a seat belt…well, you get the idea.

The heartache I felt that day was unlike I had ever felt before.  It was unbearable.  And the guilt…

That night I attempted to take my life by overdosing on certain pills, but something stopped me.

How could I be this selfish?  To take my life after what Aaron’s and my family have just gone through with his sudden death?   I hated myself for the way I’d treated Aaron, but I could not do this to them.

So, I decided to live with the pain and the guilt.

Monday Memoir: The Darkness Begins (Part One)

 

I thought living with a hearing disability would be difficult enough.

I was wrong.

Photo Credit: Pixabay Free Images

By the time I was twenty, I had a pretty good idea of what I wanted to do with my life.  So I pursued a degree in Physical Education with the hopes of going on to earn a masters in Exercise Science.  I wanted to work with college and professional athletes.   Being an athlete myself, I competed in cross-country, softball, as well as soccer.  Sports became my passion, and I’d wanted to make it my life.  Around this time I learned (finally) how to drive, and attained my driver’s license.

I was ready for the world.  To pursue my dreams at full speed.

Then, everything changed.

At first to me, it seemed pretty minor.  Getting around in the dark was growing more difficult.  I kept bumping into things (and people).  Stairs became more of a challenge.  Okay, so I needed glasses.  No big deal, right?

Wrong, again.

I went to see an ophthalmologist and was diagnosed with Retinitis Pigmentosa; a degenerative retinal disease which could result in complete blindness.

Being devastated was probably an understatement.

The next month my parents took me to Boston to see a RP specialist, Dr. Elliot Berson, at the Eye and Ear Infirmary.  He put me through several intensive tests over the course of two days, and confirmed that I did indeed have Usher’s Syndrome type II which meant that my deteriorating eyesight and hearing loss went together.

Lovely.

My dreams…my career aspirations…

I felt so distraught I gave up on them all.

I did, though, finish college and earned a Bachelor in Physical Education, but that was the extent of it.  I never went on.  Never moved forward.  I allowed my disabilities to destroy my confidence.   I’d withdrew within myself, and allowed everything else to vanish.