Learning to travel again

Learning to travel again

Learning to Travel Again

Moving Forward Series


Meena Dhanjal Outlaw

It’s just before Christmas and my Neurologist said.

“Meena, you can travel.”

It is like I can breathe again.

It’s been three years since the time I was diagnosed with Myasthenia Gravis Neuromuscular Autoimmune Disease.  This condition resulted in me having extreme muscle weakness, as well as, chronic fatigue, which resulted in me having debilitating issues to my upper body.  This only added to the existing paralysis I have had from my pelvis down to both legs and feet since the year 2000.

By my own surprise, I can say that having the spinal cord injury was nothing compared to this.  With the spinal cord injury I learned how to do everything sitting down from a manual chair.

As long as I took care of myself, watched what I ate so that I didn’t gain weight, checked my skin to prevent any bruises or pimples that could lead to sores, I was pretty much okay.

I also had an annual testing of my bladder and kidneys to make sure there were no issues. All of these preventative measures allowed me to have a good quality of life.

With Myasthenia Gravis I had to learn to take care of myself, again.

The limitations were now in my arms, fingers, hands, upper body, and eyes.  Worst of all I had difficulty when chewing and swallowing food.  By the time I got adequate help for this condition, it had also affected my respiratory function.

It has taken three years of monthly visits to an outpatient blood bank for Plasmapheresis, an immune suppressant drug, steroids, and a transplant rejection drug to get me back to me to being as close to where I was before the diagnosis. Which were the symptoms from the spinal cord injury.

As I continued to get this treatment, I became stronger, finding myself extending the amount of rest times I needed in order to make a full day without crashing.

I am three years in and I feel close to myself.  Though, being back in my manual chair is still not an option.

It was because of the loss of function from the spinal cord injury, when I got MG I was equipped to deal with the changes, including physical and occupational therapy.   It was also this time around that I received psychological counseling.

There was a lot to process.  The shock of one crisis and conquer that, only to suffer another.

Everything stopped that prevented me from conserving energy.  My body needed the drugs to catch up, per sae.  I could no longer continue with teaching my classes of Fusion Wheelchair Aerobics, which was an effective way I learned to exercise with an aerobic workout, while sitting down.  I also cut back on work and volunteer obligations. The worst was no traveling!

This meant that I could not visit my family in Alabama or London, England until my Neurologist felt it was safe.

After my spinal cord injury, I flew to London as early as six months after my injury.  I visited my grandmother, many aunts, uncles, and cousins along with other extended family.

My entire family is there except for one of my brothers who live in California.

I have always seen my family.  They would come to me and I would go to them.

I also drove to Alabama with my husband to visit his family.  Our children loved our trips.  I have loved living in the United States, but there has never been anything quite like where I was raised and who raised me.

Then, after my follow up appointment with my Neurologist before Christmas, I was given the gift of travel clearance!

I even received information about a Neurologist they knew in London just incase I have any issues.

Of course, this also meant that I had to be back in time to get the next plasmapheresis appointment.  It wasn’t as long as I would have hoped, but at least I could go!

So, with much excitement we drove to Alabama.  We stayed with my husband’s Dad for the entire week.

We got to just to get away and not think about anything, but be with family, and enjoy their welcoming.

The nine hours drive was tough on my body, but the fact that I transferred on to the back seat, instead of sitting in my power wheelchair that entire time was helpful.  I could shift my weight.  My six-year-old son quite enjoyed me sitting there too.

I did need a day of recovery when I arrived.  My body was tired.  I wasn’t experiencing fatigue, but my muscles were looser than they should have been. This was the symptom from Myasthenia Gravis.  Muscle weakness resulted in extreme fatigue, which only effects the proper functioning on the body parts that weakness is targeting. It had been a long trip.

Maybe instead of stopping for breaks only twice we will increase that to more on our way back home.

Regardless, though, I will do it again and quite happily. Now that I know what to expect, I can plan, and anticipate accordingly.

When we returned back to our home in Texas, I felt so refreshed with a sense of anew.  I was inundated with tasks that required my attention the very next day.  However, if I could walk, you would definitely see pep in my step!  However, instead you might see a beam coming from my wheelchair, which is from the smile plastered on me.

My next trip will be London, England in the summer!

Answered Prayers

Answered Prayers

Answered Prayers

Moving Forward Series


Meena Dhanjal Outlaw

It’s 8am on the morning of Christmas Eve when I practically shove David out the door to pick up my daughter and bring her home so she can spend the night with us.  Our youngest son accompanies him.

The quietness allows me to focus on getting as many gifts wrapped as possible.

In this moment I cannot help, but reflect how Christmas has always been the one holiday I deem as truly special.

Probably because as a young girl I saw my Hindu mother put up a Christmas tree every year.

In addition, she would bake a turkey she was gifted from the company she worked at as her second job every evening and all weekends.

It was a miracle to see this one time of the year be the forefront of enjoyment for my Indian born and raised grandparents.

It was also ‘The’ family Christmas with my aunts, uncles and cousins also joining us.

After my spinal cord injury I made sure this same sentiment was passed to my children in our own home.

Christmas is my way of making sure that our values have always remained the same even though I am different.

All I ever wanted to do for the past eighteen years was to make sure they knew no matter what form of a mom I am, I am their biggest fan.

My son grew up not knowing me before my accident seeing that he was three weeks old at the time.

My daughter had three years of me before I became disabled.

She also witnessed me fall to never walk again.  Shortly after her Dad left and she forever blamed herself for my accident and the divorce.

It’s been six years watching her struggle to find peace.  I have had non-stop prayers for her throughout this time.  It was in the last six months that her situation became more peril.  Her deep dark depression was truly taking her away from me, and nearly from this life.

Many parents have told me that children are resilient.  However, her pain, like many children, only became transparent in her teenage years.

My little girl has never been the same again.

In fact, I have a photograph of her a few days before the accident. This light, airy beautiful young girl with dark brown eyes, jet-black hair on light silky olive skin with a huge cheeky smile upon her face, depicting the happiness we shared.

Then, there’s the photograph taken on the day that she came to see me at the hospital for the first time after that day.

The photo showed a beautiful three-year-old girl dressed in blue jeans with a white long sleeved tee with flowers embossed on the front. Slipped over that a dark maroon half coat with a hood and zipper.

It was January in Houston at the time of this picture.  Her hair was braided on each side. She was looking right at the camera, but instead of this happy, vigorous child, there was no light in her eyes with her expression solemn.

As I worked hard to recondition my body and my mind, I made sure she also had a trusted psychologist.

Her school was very supportive since they had known me before and after. Therefore, they knew our story well.

I thought that little heart was mended by the time I married David, which was six years later. He certainly brought her the sense of safety and security every little girl depends on.

However, it was two months ago when I had received a phone call from her where she was crying, she had been diagnosed with bipolar disorder. It was my reaction, however, that had surprised her.

“How can you be so happy Mom?”

“Because I knew something was amiss.”

“So, what, you’re happy I’m crazy?”

“No, babe, you’re not crazy. You now have a means now to an end. For all the years I thought I had lost you, I too have hope now that we can begin again.”

It’s been a short time that she has been taking her medication.  I can see a young beautiful woman at the age of 21 finally have a glimmer of light in her eyes.

Being a mom on wheels has always brought upon physical challenges.  Just to get my children out from the car required me to think proactive.

In fact our mantra was, ‘safety first, then fun follows.’

This was the only way I knew how to be sure that they would not be in danger, because I worried what if I couldn’t get to them?

I had many nights of no sleep and missed many meals just tormented worrying about her.

Now she is safe.

My life has never been the same since my injury and truthfully, my heart is still healing. Thankfully, I can now feel a few more band-aids being ripped off.

It is through my sorrows that I have persevered.  My pain is what has driven me to help me, so that I can then help my children.

We must remember that not all children are resilient from a crisis.  Most, in my experience of helping others, is that they actually hide their pain to not feel even more of a burden than they already feel.

It’s Christmas Day now and two hours since David dropped her back to her safe house. Two hours in which I am recalling how these two days have been filled with Christmas spirit.

With all three of my children and my husband together after a long time, the atmosphere has changed from dread and worry to harmonious peace.

In two days my oldest son will turn eighteen years old.  He’s the eighteen-year symbol of our survival and accomplishments.

Once, he was three weeks old when I feared that I would not be the mother he needed.  Now I see I am my children’s perfect mother.

Yes, Christmas is and has always been the holiday in which I have seen the unorthodox come together, and the broken begin to really and truly heal.




Moving Forward Series


Meena Dhanjal Outlaw

I always say that there is no way one can have a debilitating injury like a spinal cord injury or an illness like Myasthenia Gravis, and not help others also taking the journey.

I began helping others three years after my paralysis, whether it was as a supportive peer, buy groceries or pay a bill.

Yet, I found, I always wore myself out in helping and fitting in everyone else’s schedule.

The biggest reason was that I simply couldn’t say no.

In not saying no, I also ran into the problem of appearing uncaring.  In fact, I have helped where the recipient expects it, and therefore not even a simple thank you is expressed.

I know that life is all about choices.  However, when there is so many that need help, I develop an inner need to help solve their problems.  Then, I become so exhausted that I really do become unavailable for a couple of days, because, quite frankly, I have given too much of myself.

Just recently I really did learn just how important it is for me to learn the art of backing off.

I was working so hard to try and help someone.  I thought that if I just helped them get everything they need they would become independent.   I saw this person a couple of weeks later, and they were not using any of the things I had got them.  In fact, they were still complaining about the challenges of their life.

I decided it was time to back off.  And, as a result I received backlash.  I was being looked upon as selfish, or even worse, just wanting to be some sort of star in the world of helping.

I had to draw a line in the sand.  I needed to set boundaries.  Yes, I should help, but not sacrifice so much of myself when they are just not ready to receive.  As much as I am doing God’s work, God never said I needed to be a doormat either.

And, lately, I have become someone’s doormat, and quite frankly, it hurts!

I don’t help to receive anything.  If anything my reward is to see them get to the next level of independence, but the other lesson I have learned is that I cannot make them do it.

They have to reach that point by themselves, and all I am doing is wasting time and resources that I could give to someone else that is ready.

The problem is, I still cannot bring myself to say no!  So, I came up with this idea that I would ration the amount of time I spend with an individual I am helping, as well as, the amount of resource I might be providing.   I determined quite quickly that just this action became another way of saying,” I will help, but only if you are truly ready to make an effort.”

I am finally learning the art of distributing myself wisely.  Mostly because I notice that when I do this, I actually do see real positive change.

And yes, even support peers can be enablers!  It just took me a while to get that.

So, now I have begun to say no although, I still feel uncomfortable.  However, I also realize that if I don’t say no, I am sacrificing myself to the point where I am being taken advantage of and I don’t like the way that makes me feel.

So, my conclusion is, yes, help and give, but do it wisely and evidence of real change will finally be achieved.

In the meantime, I have also come up with a few other ways that I feel is much politer in saying no:

“I have something else. Sorry”

“I’m already committed to something else.”

“Thanks, but no thank you.”

“I am not able to make it this week.”

“I would love to, but I just can’t right now.”

“I’ll need to bow out,”

“I’m not the right person for you, let me look for someone who can help you with that.”

“Sounds great, but unfortunately it just doesn’t work for me right now”.

These phrases still might not get me an appreciative response, but it does make me feel better that I am not actually saying No, but maybe, no, not right now.

Sick and Tired of being Tired

Sick and Tired of being Tired

Sick and Tired of being Tired

Moving Forward Series


Meena Dhanjal Outlaw

Myasthenia Gravis is a Neuromuscular Autoimmune disease that causes a breakdown in communication between nerves and muscles.  Thus, leaving the recipient of this condition with progressive weakness and exhaustibility of voluntary muscles.  It is an autoimmune attack on acetylcholine receptors at neuromuscular junctions.

Now that I have explained the technical definition, quite simply it leaves me exhausted.

Long ago, people didn’t survive this disease.  Now, with research we have treatment.

It was August of 2014 that I was diagnosed with Ocular Myasthenia Gravis, which caused extreme double vision and droopy eyelids.

By October 2014 it had affected my upper body.  Had I not already been paralyzed on both legs, I would have experienced weakness there too.

Fourteen years prior to the diagnosis of MG, I sustained a spinal cord injury, which left me a paraplegic.

The MG definitely caused complications to the point where my insurance company has determined my condition as a quadriplegic.

I was unable to lift my arms without them fatiguing out within in a second.  My mouth was affected so severely that I could not chew food, as well as, speak.

Most Myasthenics will describe the speech as if they were slurring after being intoxicated.

I didn’t have issues with autonomic dysreflexia, because it affected those with T5 or higher spinal cord injury.  Now that my upper body is affected, I have to watch for such symptoms.

It has been almost three years that I have been treated with a combination of plasma exchange, auto–immune suppressant drugs, in addition to an anti rejection transplant drug.

My treating neurologist explained that this combination of drugs and infusion would allow me a better chance in reaching remission.

I believe I was reaching remission just two months ago.  Then, I had a urinary tract infection and I relapsed.  It was just that easy to relapse.

It took a re-evaluation of my treatment plan to get me back on track.  Luckily, the next day, I already had an appointment with my neurologist.  If I had not I would have probably had to make my way to the emergency room, as I was close to a Myasthenic crisis.

The anti-rejection transplant drug I was taking was changed.  We have a new goal; by summer of next year I will not need to have any more infusions.

Instead, I would just continue to take the prescription medications. This is music to my ears. All the prodding and poking with the constant regimen of medications, infusions can be mentally challenging at times.  There is a reason why some cancer patients give up. In fact, many of the drugs used to treat Myasthenia Gravis are used to treat cancer.

Three years is a long time to get used to the condition.  However, it is interesting that it has taken me the same amount of time to as my paralysis, to now accept this.

What I cannot get used to though, is the chronic tiredness and limited amount of energy I encounter on a daily basis.

It was Christine Miserandino, who was diagnosed with Lupus in 2003 that created the ‘spoons analogy’.  It was Christine’s way of explaining how to quantify the amount of energy she had throughout a given day.  Each activity requires a given number of spoons, which could only be replaced as she ‘recharges’ which only occurs after rest.

When I first was diagnosed, I spent most of my time resting after each activity, whether it was brushing my teeth, brushing my hair, having a shower, and driving my car.

Regardless of any condition, when one has children, they still need to eat and require supervision.

I have two children that are still attending school.  Therefore, the chores were still endless.  In addition, I continued my writing endeavors, volunteerism and tried making time for friends, as well as, family, which became the most challenging task of all.  They could not and many still cannot understand just how bad I feel at times.

I can truly say that the spinal cord injury is nothing compared to this.

When the doctor says, “You will probably not walk again and will function from a wheelchair”, I was able to deal with that.

My legs didn’t work? Okay.  I will learn to do everything sitting down? Okay.  So, I learned everything the physical therapists were teaching me.

It is only after aggressive treatment after being diagnosed with MG, that I am now as close to how I was with just the spinal cord injury.

Doctors still haven’t quite figured out the connection to fatigue and MG, but they do understand it is also very much a part of the condition.

Yet, as tired as I might feel each day, I still dislike pity and never stop pushing myself to accomplish as much as possible.  And,  if I feel sick of tired of being tired, I think at times, that’s okay too.

As for those that don’t understand, I challenge you to find out, therefore you won’t take it personally that sometimes I just have to go home and rest.

Myasthenia Gravis Foundation of American (MGFA)

Myasthenia Gravis Houston Support Group

Trini Mendenhall Community Center,
1414 Wirt Road,
Houston, Texas 77055
Facebook: Myasthenia Gravis Support Group Houston.
Website: www. Mghoustontx.org

Central Texas Support Group

Meets in Austin, Texas

North Texas Support Group

Meets in Greater Dallas

Alamo Support

Meets in San Antonio

Corpus Christi, Texas

Why Be a Support?

Why Be a Support?

Why be a support?

Moving Forward Series


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
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


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.

Share This Site!

Share our page with your friends!