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!