Being Whole Part III

Being Whole Part III

Being Whole Part III

Moving Forward Series

by

Meena Dhanjal Outlaw

There are so many machines and equipment that rehabilitation facilities use to help.  From all I have seen in watching as a newly injured patient progress, it is a breakthrough in how far medicine has come.

I did get some hamstrings back. I even gained movement in my hips, but I never got anything substantial that could allow me to walk independently.

I never gave up. I continued to push forward. My goal was three years of intensive hard work to try and walk again.  That way I could never say I didn’t try.

In the meantime, I was driving everywhere by myself.  I had already began to move into my new house built accessible for me, and safe for my young kiddos.  Life continued in other ways too. I dropped my children to school and picked them up. We would do all the after school stuff that is part of parenting, including homework, dinnertime and bath time before bedtime finally came.

When they went to bed, I studied to keep up with my online classes.  It was also during this year I began to notice men being attracted to me.

In the third year, we understand our fate, but we are not ready to quite accept it. For me, it was the hardest time of all. I had to agree that with all the dedication I put into trying to heal my body, I wasn’t walking.  My orthopedic surgeon told me after my accident, I had three to eighteen months to get something back. What I did get back was the ability to function again, even though it was in my wheelchair.

When I reached the fourth year, I was so sick and tired of thinking about my disability that I just wanted to get out and enjoy my life again.  I didn’t know what that would really entail, but I was ready to find out!

However, I have also seen many who have given up by this time, which is why I am such a big believer in giving someone your undivided support.

It is through these times, I have found that we want to be heard. We want someone to really listen to what we are going through, and remind us what they experienced before they arrived at this point.

Maybe to some, we might sound like a broken record, but pain doesn’t have a timeframe. It is a force in itself.  And, if it is ignored then the effects on the owner of the pain can be devastating.

In the years that I have been disabled myself, I have seen so many positive forms of help for us.

Now, there are knowledgeable social workers, counselors, and licensed psychologists that doknow what we are going through. They also have the necessary tools by training to help us.

We are also able to connect with other people with the same condition as us through social media.

There are also research study programs going on in the country.  These vary throughout different medical facilities that have invested money into learning about our different bodies and experiences.

All these are ways to allow us to understand that we are not alone.  In addition, and excitingly, there are people that do understand us.  Even more so, there are people who want to understand us even better.

So with all that we have learned and all the new information there is to help us, there really is one common goal. Out of all the complexity of treating and aiding a person to become stronger, it is the goal is so simple, to be whole again.  It is when we really have someone who will listen and understand what we are going through is when we begin to start to eventually heal the wounds of our heart.

Being Whole Again Part II

Being Whole Again Part II

Being Whole Again Part II

Moving Forward Series

by

Meena Dhanjal Outlaw

I have learned so much just by observing others.

I’ve seen people use our vulnerability to sell us everything and anything.  And, we will pay with the hope of some sort of high standard of loyalty from someone that understands!

I’ve seen hired help go from being an unlicensed home therapist with added healing techniques, to suddenly charging small change to paint our disabled ladies nails at a disability event.  Then, all of a sudden, I saw this same person as a professional photographer, once again, hired by a peer.

I paid her to paint my nails too.  I recognize the need to feel pampered without running into the possibility of a spa specialist unable to serve you for many different reasons.  For instance, they don’t want to take the risk of giving you a pedicure and you not able to check if the water is hot.  Or quite simply, because you don’t have the ability to get on their spa chairs equipped with a footbath, and different tensions to massage your back while seated. Many just don’t have big plastic tubs as apart of their supplies, which, in my case, has been a good solution.    `I can understand what it means to see someone actually want to do something like that for us.  And, we will pay just so we feel included.

I did eventually find a salon that has served me for many years without any hesitation.  I always have a wonderful experience.  I explained to them just how they could actually include me.

Needless to say, some of us don’t see it when we are being taken advantage of.  I have often wondered why such solicitors of service feels as if we can actually afford to pay them?  And, there is where the problem lies, we can’t but we do.

As a single disabled mother with two infants I have been ‘that’ easy target!  It is also the reason why I am a skeptic.  I have been and seen others get burned too many times.

At first, I used to think that this attitude wasn’t good and I had become jaded.  Then, just as quickly, I concluded that I wasn’t jaded, but am actually able to spot a fake friend a mile away.

For example, many years ago I spoke at a church about living with faith versus fear. I met some genuine friends.  Then, there were two, a mother and son who approached me.

They said,  “ God brought us together for a reason. We have something that will be of great help with your paralysis.”

After their insistence, I invited them to my house.  They wanted me to buy magnetic products that would help me rejuvenate my nerves.  I was only two years into my paralysis. I did look at everything that had the potential of helping me walk again.

I even had a mother of a son also with a spinal cord injury give me the same concoction he drank.   I couldn’t even get it passed my lips without wanted to heave.

These are elements of happens to our mind when we are traveling the road of grief.

We want something so much more that we seldom find.   It is the hope that someone will actually listen to us and make us feel like we do matter.

In my experience, and reconfirming this theory by watching others go through the same, I have found that there is a pattern in the grief of someone that is now living with a disability.  It encounters the first four years of our post disability.  In my case specifically, it was a spinal cord injury.

The first year, we are shocked, stunned and baffled.  We are also very hopeful for a positive outcome.  For many there is, but for those, like myself, really do know deep down there is only hope.  Hope that something will come up in the not so distant future that will bring us with a better outcome.  We will even seek it in different countries, pay for it, be in a research experimental program, and the list just goes on.

The second year, we have hopefully with help from experienced physical and occupational therapists, we begin to understand why they make us do all those funny exercises. With their fine teaching, we are getting better at functioning beyond our impairment.

One of my therapists made me stretch my arms back as far as they could go. Of course, we started off gently, but in time, for a short petite person with short arms, I was able to have a good reach in my manual chair as a functioning paraplegic.

For those of us that have gained some further movement in our effected limbs, the hope is with more work, the stronger that will become.

In my case, I hoped.  With all the programs I got myself into, including the veteran’s memorial hospital in my city (No, I am not a Vet), I worked tirelessly. They researched how far I could gain mobility by walking on a treadmill while being held up by a harness hanging above me on the machine.  This was eighteen years ago.  Treatment has evolved.

Being Whole Again Part I

Being Whole Again Part I

Being whole again part I

Moving Forward Series

by

Meena Dhanjal Outlaw

I spend a good bit of my spare time volunteering. For several years now, I have found myself in the position of leading various support groups.  It just so happens that one of these groups is in the city where I reside.

It’s nice to know that our friendly neighbor, TIRR Memorial Hermann agreed to let me lead a group at their facility for all disabilities.  This particular group meets on a Saturday once a month.  Specifically, we always meet on the third Saturday of each month.  We are still in our first year, and it is rapidly growing.  Many of the people that attend happen to be patients at this facility, and still somewhat in a steady phase of physical or occupational therapy.

Being a part of people’s lives in such a vulnerable way isn’t something I sought.  Though, I do feel a sense of kinship.

I could always understand their body language.  I knew when they were being strong, but hurting on the inside.

I also could tell those that seemed ambitious with what they wanted to do in their new future, like writing a book.

In time, as our lives continue with our disability, and becoming a thought in the back of our mind, it is obvious we are also seeking to fill a void.

I always wondered why many people with a disability feel as though they want to use their position to gain recognition in the world?

Yes, of course we want to tell our story and share with others.

My first book was about the aftermath of my injury.  I had it published because I really wanted to just have it out there in case it could be of help to another.  Funny enough, it became help to many.

As I became well known because of my writing success, something else came as well, jealousy.  For some reason, I found myself bumping heads rather than dishing out hugs.

This saddened me, and I pulled away emotionally, keeping people around me at an arm’s length.  This was my “defense mechanism” for not wanting to get hurt.  As people seemed so happy for me, it didn’t take long before they made negative comments trying to diminish what I have achieved.

The silver lining is that it has also allowed me to surround myself with people I knew I could trust to have my best interest at heart.  I also learned a deeper lesson, which is to not feel like I need to get everyone’s approval to be happy, which if we are truly honest with ourselves, am our main crux.   Alas, most of us seek out approval, acceptance, and affection in all the wrong places.

In our cases, it takes the vulnerability of a disability to lift us out of what would normally be not such a good reason.  Next thing you know, we have surrounded ourselves with people who don’t have good intentions for us at all.

Nevertheless, in consideration of all that I have seen and been through in my journey, there is one critical issue which most of us seem to always be subconsciously seeking.  That is to be heard and understood.  We can’t find that in our everyday lives, so we venture out using the far depths of media and publications.

Having a debilitating condition doesn’t just blow in any typical storm.  It comes in with the vengeance of a horrific hurricane.  The result is each of us that have gone through this can truly tell you what it is like to experience real pain.

As early on as the very beginnings of our disabilities, we already know we are different.  We also know that some people will never see us as any other way.   Unfortunately, it doesn’t always just stop there.

Ten Things About Me

Ten Things About Me

Ten Things About Me

Moving Forward Series

by

Meena Dhanjal Outlaw

Have you ever felt the need to tell someone what you’re really thinking? Especially in the way I am be spoken to.

I don’t have a confrontational personality.  If anything, I prefer to roll away and think about things that matter.

Then there is that one person you come across who has to say something about your disability. Most commonly, they tell me that I’m amazing, and such an inspiration.

In moments like this, I often wonder if comments like these are really appropriate and if I should be offended?  Mainly because I feel my disability shouldn’t define my capabilities.  Yet, truth be told, that’s really how most people think.

I don’t think I’m particularly special for going grocery shopping without requiring assistance.  I also don’t think I’m being inspirational when I take my kids to their extracurricular activities.

It makes me wish I didn’t have to always say thank you for something that I feel I’m supposed to do just like anybody else.

Many times I find myself wishing people just knew more about me without making me seem so ‘special’.  Believe me, I think I’m special too, but not in the same way another person would think.

If I had the opportunity to state a measure of expectancy in the way that people interact with me, I would tell them ten things they should know about me.  That way, the level of respect is equal.

  1. I’m a woman: beautiful, insecure sometimes and secure other times, sensual, and emotionally charged.
  2. I’m a mother: fully, actively, courageously, and protective.
  3. I’m a wife, in all senses of the word such as comforting, sexual, intimate, and loving with the desire to show my partner just how much.
  4. I work. I am organized, and love the career that I chose for myself.
  5. I am OCD. Oh yes! I love a clean house. In fact, I insist on it.  I don’t think a professional maid service can clean my house better than me, even though I do it from my wheelchair.
  6. My appearance matters to me. It’s my way of saying to everyone, “I don’t just seem put together, I actually am.”
  7. I can play sports, too. I just don’t choose to do so. I had two left feet before I became paralyzed and now I have two left hands. Instead, I prefer to make my main goal in life to be the best mother to my children I possibly can. And, a lot of times, being a mom on wheels feels like I am running a marathon at times.
  8. I don’t want to compete with you. This is a big one. Just because I’m doing well doesn’t mean you are better than me for trying to follow in my footsteps. Trust me, I am happy I have motivated you to do something for yourself.  So, when you downplay my accomplishments, it’s saying a lot about you, not me.
  9. If I’m going to donate you’ll never know I have done so. I want to help, but I’m happier if you never know that I was the one who gave. Therefore, I don’t think it’s my business to know who you have helped either. Bragging is unattractive.
  10. I can run my house, too. I do not have any desire to prove I can do something. Yet, there have been times when a person comes to my house and wonders how I can afford it, and how I can keep it looking good. This type of thinking has always struck me as blatant stereotyping.

I am saying aloud that no matter whom you may be or what you do I can do it, too.

So, maybe when you approach me for the first time you won’t have a pre-conceived notion about me.

Even more so, I AM just like you in many more ways than the impression my wheelchair may initially give to others.

Touchingly Unexpected

Touchingly Unexpected

Touchingly Unexpected

Moving Forward Series

by

Meena Dhanjal Outlaw

We have a movie night now with the girls.  I am at the movie theater with my friends waiting for more to show up.  Tonight, we are watching an Indian movie.

While meandering our way through the Saturday night crowd, the door to our theater is opened by one of my friends to let me in.

I immediately head to the only spots available for a person using a wheelchair:  up front.  As I nestle comfortably in my wheelchair spot, my friends sit on either side of me in the seats provided.  I am the only one in our group who is disabled.

There are five women sitting on either side of me. Two, I have only met for the first time tonight.  One is new to my group of friends I normally hang out with.  Our children play together. When time permits, we all like to have a girls’ night out.  The three other friends that normally join us cannot make it tonight.  I have one of them with me tonight, who I happen to very close to.

As the theater darkens and the movie begins, the new friend to my usual group encourages my one friend to move to the row of seats behind me that are above the steps.

They walk up the first flight of steps and make their way to the seats.  The lady that initiates this says to me,

“Meena, you can just move back and sit directly in front of us”.

“I’ll block the walkway,” I say.

I can tell my friend hesitates as she follows the rest of the women. I am sitting alone.

However, this situation is nothing new to me.  In the eighteen years I have used a wheelchair to get around, I have encountered all sorts of behavior and physical obstacles that limit my access to enjoying fun things.  I have grown so accustomed to it that it really doesn’t even bother me any more.

The movie begins and as I focus I notice my friend sits back down in the seat next to me.

This particular friend never has to be asked to accompany me.  I don’t ever pressure her or make any suggestions of any kind.  She is the one that deliberately keeps my portable ramp in her garage so that I can go to her house without obstacle.  She is also the one that understands the complexity of my situation when I approach a barrier.   She’ll have already figured out a solution before I have to think about it.

I lean in and tell her she doesn’t need to sit so close if she doesn’t want to.  She doesn’t say a word.  Instead, she just smiles big as she always does and stays seated.

Then ‘that’ lady comes down and whispers into my friend’s ear.  This lady thinks I can’t hear what she is saying, but I overhear her asking my friend why she is sitting here? My friend smiles big again and declines to move.

It’s these types of unspoken acts of kindness and generosity that someone like me may rarely encounter.  Not because I don’t have friends. Most friends don’t think as far as this dear friend does.  She may disagree with any of the other friends, but she always thinks of me.  She is also the one that organizes dinner plans within our group when it’s my birthday.

When I reflect on this, it fills my heart with joy and appreciation for her acceptance.

Yeah, to be accepted is a subconscious goal of anyone living with a disability, within a world that still doesn’t completely understands the obstacles one faces.

As I sit next to my dear friend, I soak in the entire experience.   We laugh at the movie together with the unspoken and instinctive knowledge of what inclusion is really about.

Learning to travel again

Learning to travel again

Learning to Travel Again

Moving Forward Series

by

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!