Why Be a Support?

Why Be a Support?

Why be a support?

Moving Forward Series

by

Meena Dhanjal Outlaw

When I had my spinal cord injury that left me paralyzed eighteen years ago, I felt as if my whole world had collapsed around me.  Everything and everyone I knew had cleared away with the evening tide.  Life was never the same again.

In my mind, the biggest shift was the area where I lived. It felt as though I was the only one who was in a wheelchair.  Whenever I went out, whether it was to a grocery store or a mall, I just never saw another disabled person.  For years it baffled me, and in those first few years it also saddened me.  I knew first hand how it felt to be alone.

My family lives in a different country, so the only company I had after my divorce was my two beautiful children. However, they were very young, so conversations were never about how I was really feeling as a Mom who was functioning from a wheelchair. I felt frustrated and isolated while constantly navigating the constant waves of emotions that seemed to be up one day and down the very next.

The first year after I became paralyzed I was in shock.  Not just from the complete change of how I functioned from a physical level, but also from dealing with the emotional turmoil my paralysis brought.

I am not the only one that has gone through this process.  I can say that now, because enough time has elapsed since my accident.  After reflecting on the last eighteen years and taking inventory of my process, I can say that the second year was when all of the attention I was giving to therapy to try and walk again began paying off by ultimately making me very strong.  By the third year, I was strong enough to be independent to the point that I no longer needed help taking care of myself day or night.  So the three years I gave to trying to walk again resulted in me being a very self-sufficient individual who was able to function extremely well from a manual chair.  Because I was confident with how I did things, schoolteachers of my children were noticing that confidence and other people living around me, which made them, respect me rather than turn their noses up at me or, even worse, pity me.

As the years following my paralysis continued, I was still pining for something else that just hadn’t ever happened for me. Then in 2013 I met a couple of new friends and got involved with a support group we developed in Houston, called Connections Peer Network.  I gave all of myself to help because I knew first hand how important it was to make sure no one felt alone.

Then, after I was diagnosed with Myasthenia Gravis in 2014, I came across a support group assisting people who were living with MG. I instantly had a whole new set of friends who were helping me understand this disease.  We shared so much in common, and the things that stood out the most, aside from the fact that we all had Myasthenia Gravis, was that all of us were Type A personalities, and we were givers of ourselves.  It’s important to understand that stress is what triggers this autoimmune disease.

In 2015, a brand new support group was founded in the city where I live.  It was as if Heaven just dropped down on me.  I met five incredible women, all of us completely different in our disabilities. I have to say that was one the most beautiful experiences of my life after my spinal cord injury.  In the years leading up to that time I had gained a wonderful husband, I had given birth to a new child to be included with my other two beautiful children, and now I finally had friends close to home who really got ME.

Since then, a couple of other support groups have popped up locally and I have been doing what I can to promote those too.  Each one is different, however, they both bring the same philosophy:  ‘you’re not alone!’.

Now, when I go out I no longer feel like I am the only one. I may not bump into my wheelchair buddies on an everyday basis, but I know for a fact that there are people other than me who are looking forward to the next time we meet.

Support gives hope, wisdom and, most importantly, a listening ear.  For those who don’t feel like talking, sit and hear what others have to say about whatever experience they are living through at that time. Regardless, it is such a powerful feeling to leave a room full of people who understand me without having to explain too much.

Myasthenia Gravis Support Group

Trini Mendenhall Community Center, 1475 Wirt Road, Houston, Texas.
Meets second Saturday of each month from 11am to 12 noon.
Contact meenamghouston@gmail.com,
Facebook: Myasthenia Gravis Support Group Houston.
Patients, caregivers and family members welcome.

Amazingly Abled Support group for Physical Disability.

First Colony Church of Christ,
Sugar Land, Texas 77479
Contact:meenaoutlaw@gmail.com
Only patients allowed. Closed-door support group.
Meets every Wednesday from 5:30 to 6:30Pm.

Hope keepers

Cornerstone Community Bible Church
6701 FM 763, Rosenberg, TX 77469
Biblical support for Chronic Illness
Patients, caregivers and family members welcome.
Contact: Jeff or Lesa Junek at jjunek@sbcglobal.net
Meets every fourth Saturday of each month from 1:30pm to 3:00pm.

Capability Conquerors for ALL disabilities

TIRR Memorial Hermann
Highway 6
Sugar Land, Texas
Meets every third Saturday of each month from 11:00am to 12:30pm.
Contact: meenaoutlaw@gmail.com

There is Something in the Air

There is Something in the Air

There is Something in the Air

Moving Forward Series

by

Meena Dhanjal Outlaw

In my experience, it is rare that a crisis doesn’t break apart friendships and other relationships, but instead pulls everyone involved closer together.  I observed this rarity in awe when I became sick with Myasthenia Gravis in 2014.  That time around the love and support of others was so prevalent compared to the destruction and separation I witnessed when I had a spinal cord injury fourteen years prior.

Other examples of times that I observed this supportive coming together of people during crises include the disasters levied by Hurricane Katrina in 2005 and Hurricane Ike in 2008.  Yet, it was when Hurricane Harvey hit recently that I really felt a tsunami of love in the air from family, friends, and perfect strangers alike.

As a disabled mother I was so afraid when I had to evacuate my home in the early morning hours of August 28, 2017.  I was scared of what would happen to me.  Would I lose my wheelchair?  What place would be accessible for me?  Then, the added worries included the safety and care of my children.  My family and I definitely stepped into survival mode.  The frightening part for me was I am almost too accustomed to stepping into those shoes, but what about my children?  Luckily, I had my husband, David, to share the burden.

As we were frantically packing the most basic of necessities so that we could evacuate as quickly as possible, some good friends became our guardian angels by taking us in without pause and making accommodations for me.  Additionally, my children were treated like they were on vacation.  Only David and I had to worry about what would happen if our house were flooded.

When we were finally able to return home a week later, I immediately started helping as many people as I possibly could.  Relying on my knowledge of research, I was able to help many individuals and families by helping to supply what they needed to get back into their homes; some more damaged than others.  My family and I definitely counted ourselves as the lucky ones in that regard, but the guilt that came with that good fortune was so compelling that I couldn’t go to sleep at night before making a phone call to have something delivered to another person in need.

However, the most amazing and extraordinary part of this was that it wasn’t just me.  All my neighbors, friends, acquaintances and even perfect strangers with whom I spoke in stores were doing the exact same thing.  The aura in the air was contagious, filled with so much understanding and this undeniable need to share love.  So many had lost, but there were so many who gained friendships for life.

It’s been a month now and I can still feel it, although the hustle and bustle of normal life is back again.

My final prayer is that the sweetness and love in the air stays.  As a disabled person living in a world that can be so cruel with words or actions, it is one of the few times I felt completely accepted and understood.

Survivor’s Guilt

Survivor’s Guilt

Survivor’s Guilt

Moving Forward Series

by

Meena Dhanjal Outlaw

We have been home a full week now.  I haven’t left my house since we came back.  I have gathered everything I can think of that I don’t use that can be of use to someone else and donated it.  I have offered a room, even thought about buying someone a car that lost everything and has no way of getting to work.

Survivor guilt is a deep guilt that comes when one survives something from wars, natural disasters or other traumas.

Survivor guilt was actually first documented and discussed after the Holocaust.  It is a symptom of PTSD.  Once can suffer Survivor Guilt independently from PTSD too. Regardless, it is very important to understand what is happening in order to reach out for the correct type of help.

I recognize the symptoms of PTSD from when I sustained the spinal cord injury.  Then, the aftermath of cleaning up my home life, social life and then trying to figure out where I fit in now that I function from a wheelchair.

Even though it has been many years since the spinal cord injury, the symptoms of PTSD can raise its ugly head when other traumatic situations happen in life.

I had it again when I got divorced, had to move three times before I finally found a house that was sufficient for my children and me.  The symptoms flared furiously when I was diagnosed with a neuromuscular disease that affects the upper part of my body that isn’t paralyzed.

As I stayed at my friend’s house during the evacuation of Hurricane Harvey, I could feel the sadness and hopelessness begin to trickle it’s way within me.    I already suffer from anxiety and take a regimen of anti anxiety medication that I believe keeps me well balanced.

However, in this case where I had no idea if I had a home to go to, or what would happen since I didn’t have flood insurance like many of my neighbors, I could feel the fear engulf me.

I kept myself in what I call prayer mode.  I silently and privately recite prayers over again.  I deliberately made myself focus on what was still good, true and pure, which happened to be my children, my husband, and my dog.  We were alive and together.

Now, that I am home, I am doing what I can to give back and help those who were less fortunate.  I feel for them, because that could have so easily been me.

I still cringe at the thought of how a rescue team would help someone like me.  Would they take me and leave my wheelchair?  I cannot do anything without it.  It is a horrible feeling.  I am so dependent on my adaptive equipment to do the basic function such as going to the bathroom, taking a shower and even more importantly taking care of my children’s needs.

The Myasthenia Gravis support group had to be cancelled this month because the facility was closed until further notice.  It was the one time I felt a support group should be available.  I sent out an email and asked everyone to check in with me instead.  Thankfully, most are okay, whereas some have lost their homes.  For those, at least I feel we can forward them information to recover.  Yet, there is a part of me that wishes I can just wipe the pain and suffering away from people.  I don’t like it, mostly because I know what it feels like.

Here are some places you can contact if you need help that require little money.

Crisis Psych care: – Memorial Hermann Psychiatric Crisis Clinic.  It is a walk-in clinic.  It is designed to keep people out of hospital emergency rooms.  Will consider taking people without payment.

Spring Branch Health Crisis Clinic, 10780 West View Drive, Suit C, Houston, Texas

Wilcrest Community Medical Center, 11226 S. Wilcrest Drive, Houston, Texas 77099. Phone. 281-977-7462. Clinic hours are Monday to Friday from 8am to 5pm.  They accept patients until 4pm.  No appointment needed.

I Release All Control

I Release All Control

I release all control

Moving Forward Series

by

Meena Dhanjal Outlaw

It is day three that we have evacuated our home.   The place where I feel the safest now is possibly the dangerous place of all.

When I bought the house, I knew it would be the perfect place for my children and me.

Now, all I keep doing is watching and waiting for word on how my wonderful sanctuary is doing.

They say it is all stuff.  No, this isn’t stuff this is my whole life.  It is all I have left as a disabled woman, mother and wife.  I have lost so much in my life as a result of my spinal cord injury and endured more from having a out of the ordinary neuromuscular disease like Myasthenia Gravis dominate my body.

I continue to hear myself pray as I sleep.  I’m on a bed that is actually an exercise mat.  My wheelchair is still by my side and Thank God.

As of yesterday I felt myself, yet again, let go of any idea that I might have that says I actually have control of my life.

Sometimes, I wonder if that is what faith is all about?  We really do put our hope in the unknown.

It’s my husband’s birthday today.  We still made him a cake and he blew out a candle.  I can see his nerves.  All he wants to do is make sure his wife and children are okay.  And all I can hear myself say is thank you, thank you, and thank you.

I have the best gift a woman can ever have, and that is a caring, loving and protective husband as he.  What luck I have.  Where other cultures feel I am a curse being disabled, I feel so rich.  How could this be a curse?  God dropped him down especially for my children and me.  We learned to love and live again all because he didn’t care that I was disabled and functioned from a wheelchair.  Instead, he thought I was the most beautiful woman he had ever seen in his life.

So life is a box of chocolates that’s for sure.  I am really happy with the flavors I have pulled out so far.

I may not have a home to go to, but I have my what really matters in life, Love. For if there is no Love, there is no God.

Dealing with Indifference

Dealing with Indifference

Dealing with Indifference

Moving Forward Series

by

Meena Dhanjal Outlaw

My kids are off from school for the summer. I decided I would sign Jamie up for piano lessons.  He’s about to turn six years old.

Every time my children were home for the summer, I have often felt as if I am the only parent that thinks almost three months is just too long for them to stay home.

My seventeen year old decided he was going to spend his weekdays taking extra credit classes at summer school.  As happy as this made me, I also realized, there goes the majority of my summer activity money.

So, with my youngest, I find out myself thinking once again, what do we do and most importantly, what can we afford?

After looking at a few options, I decided on piano and swimming lessons.  As he graduated from Kindergarten, he received two very large volumes that were filled with math problems, in addition to reading, and science worksheets.  So, in a nutshell, I had my work cut out for me.

On our first day of swimming lessons, we entered in from the lobby entrance.  This was where all the employees sat to sign in new participants, as well as, adding and amending schedules.

I paid for ten days of a class known as ‘catfish’.  Jamie would be taught how to not be afraid of the water.

One of the sales clerks walked us into the main area of the gym where Jamie would meet his swimming instructor.  We passed the many changing rooms, until we arrived to a large waiting area.

This is where parents sat in the rows of chairs in what was a fairly decent sized space.

Beside the door that the children would go through once called to begin their session was a little play area.

It housed a TV that played a latest kids movie, and some toys.  I didn’t have to tell Jamie where to go.

As I look around to decide where I would park myself in the power chair, I realized there were no spaces for a wheelchair.  I had to move a few chairs around in order to scoot myself into where I could sit in front of the very large window in front of us.  Behind the window was the huge pool with many instructors teaching their little catfish, stingrays, and dolphins and all the way up to the highest level of Stroke 3 students.

I realized even if I pushed the chairs around I was still sticking out and found myself having to scoot either forward or backwards to allow others to pass me safely.

As Jamie was called in to his lesson I excitedly sat watching for him to appear in the window and with camera in hand.  However, seeing that there were three rows of parents in front of me, I couldn’t see him.  I elevated my wheelchair and I finally got a view of his little head bobbing up and down the water being securely held by his teacher.

I was delighted.  I found a place where he could learn something new, and I could stay cool which helped with the constant influx of irregular body temperature I experience from the spinal cord injury and Myasthenia Gravis.  With the spinal cord injury I get cold.  With Myasthenia Gravis, heat can exacerbate me.

Normally, when I go to any place more than once eventually people get used to seeing me, so someone will hold the door open, or even help pull out a few chairs for me.

In the ten days of attending with Jamie, taking him to the changing rooms, helping him dress and leaving the facility, it was only one time that another parent held a door open for me so we could exit the building.

On our first piano lesson, things were a little better.  I was received with kindness and no one seemed to have any problem in opening the door.  The only problem I experienced was the size of the waiting room.  It was tiny.  The seating consisted of black leather couches that lined the walls on either side of the entrance doors.  Even if someone did want to pull a chair out, they couldn’t.  The only place I could sit in was in front of the actual door.

So, as I sat there, customers had a hard time getting around me.

“Oh boy,” I thought.

It is never a comfortable situation to be in, but I have been down this road so many times in the seventeen years I have raised children from a wheelchair.

Most times when I mention something to the owners of an establishment it is received either positively or negatively, but the problem in this case was, they just had no space to accommodate my power wheelchair. What was I going to tell them? You need to get a bigger waiting room? You need to take out half of your seating?

I also thought, “Wow, they obviously don’t have kids that are in wheelchairs that attend their music lessons, what a shame.”

On the second visit we went inside, the owner of the established told me I needed to move into a space that put me in front of the couches on one side of the waiting area.

She was trying to get bulk items from her car and bring them inside to the facility.

In the meantime, no other customers could sit on the seats behind me, and the ones that entered looked at me as if I was deliberately trying to block the seating.

One man stood in front of me just staring.  I had to apologize and explain the situation.  Luckily, he was courteous and waited more patiently than I myself could muster.

Here’s the thing.  Either I stop going and just let my children not experience certain activities in their lives, or I suffer the inconveniences and rudeness just so that I know my children are not living the indifference with me.

Sadly, it also just means that I am the one carrying the stress with me.

How can any human go around as if nothing has happened in my shoes?  I can’t, no one can.  However, If I complain, it will only make my child feel the blunt of the situation, and in the seventeen years I have been a mom on wheels, I have done everything I can to avoid such moments for them.

So, at the third piano lesson, I made sure Jamie was safely deposited into the facility with his teacher, and then I sat outside the front of the store until his class had finished, regardless of the blazing heat, or how my body was going to react.

It is at moments like this where life in a wheelchair is not pleasant, but to complain would only make matters worse.  Sure, I could tell them about the Americans with Disabilities Act, but how would that help my five-year-old child who is just trying to learn something in life?

Instead, I choose to focus on the fact that my child is going to be even smarter in life, because I put away the indifference and decided this was not going to affect his life.

my life.  However, even more so is the realization that I have three children to whom I gave life through birth.  Two of my children were born before my spinal cord injury, and one after.   To some people that might not be much of an accomplishment, but I beg to differ.  Being a mother is a blessing.  Being a mother and paralyzed, well that’s just unique.

When it rains it pours

When it rains it pours

When it Rains it Pours

Moving Forward Series

by

Meena Dhanjal Outlaw

It’s been two days now since we had to evacuate our home.  Hurricane Harvey has affected Fort Bend to where we are now known as the 800-year flood.

Midnight was when we decided we had to leave.   Our lives are more important.  A wonderful family decided to take us in.

As a disabled person, all I can think of is what’s going to happen?

The first things I grab are my cath kits and medication.  Even then, I know I only have five days of the main medication I need that keep me from having muscle weakness. Paralyzed by the spinal cord injury and symptomatic from myasthenia gravis, my challenges are endless at times, well so it seems.

I moved into my home as a refuge after building it for my children and me.  I got married again, had a baby again.  The kitchen table holds so many memories.  I had to leave all my photo albums behind.  I know it is all stuff, but it is all I have left.  Life has already been cruel enough to me.  I having nothing left if I lose the house.

They say God only gives us what we can handle, but at times, that feels like a cruel joke.

I have my family.

I have been watching the news just like many Houstonians and Sugar Land residents.

I cannot help but feel guilty as I watch TV and see the devastation. Lives are already lost.  People are missing.

I sit here with food, shelter and water to feed not only myself, but also my children.

Last night I slept again, but I could hear myself pray, again.  I keep reciting the Lords prayer over and over, silently.

As soon as this is over, even I, in my wheelchair can help someone, whether to give food, offer room, or just be an ear for those reliving the trauma.

The friend that I am staying with is disabled too.  I watch her parents take care of her around the clock.  It makes me think about all those with a disability that have to leave the safety and sanctity of their homes to go to unknown place wondering who will take care of them and how.  This is trauma all over again.

I have lived the last seventeen years of my life disabled and full of optimism.  This is all about humility and humanity.

The family who have opened their doors to my children, husband, dog and I have scarified everything to help their daughter.

My own family calls me every day from abroad, worrying so much for my safety. They would be here in an instant, but this is one of those rare times where we understand the true impact of Mother Nature at her most volatile.  No one can come in and no one can get out.  Airports are closed. Roads are flooded.  We are stuck.

I can see my friend’s family silently worry too, for their home.  If something happens to them she will have no one.

Can anyone imagine living like that?  Well, most, if not all with a disability can.         Now I sit and wait to hear how much worse it will get. Then we will know if we have a home to go back to.  Yes, home.  It’s been my refuge since my circumstances changed as a result of the spinal cord injury.

Right now this is as much as I can take.  Between the paralysis, Myasthenia Gravis and dealing with the challenges of life, I pray that I am not witness to the 800-year flood devastation.

No more Lord, please no more.