Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Much, much more of the story of “NMO & Me” to unfold, as Dr. Will Meador, one of the neurologists who treated me said, “It will be months and/or years before you know how much you will recover.” I think of that statement often; it brings me comfort knowing this to be true I have regained so much more than I thought possible in the beginning.
I have a good life. I am a simple man with simple needs and wants: a partner in life – my best girl, Susan, this amazing person by my side in all things, the good/bad/ugly. Caregivers are bright shining stars for all of us who suffer from NMO – my sisters & brothers know this thing well. I am everlastingly thankful to have the support system in my life.
An honor and privilege was granted to me to represent a foundation that I by happenstance bumped into at an event in Washington, DC in November 2019 at the Viela Bio event. I met a new sister, Sumaira, as well as many other sisters and brothers with our condition. It was a blessing to be with so many “Unicorns” in one location; I was in total awe…
Sumaira posed a question to me that I had not even thought of,
“How does it feel to have a condition that predominately affects women?”
I had to hesitate and think. You know, I have long held that I am a man who is in touch with his feminine side. My mind went to (I tend to wander) of all of the mentors in my life and they’ve almost always been women. They are trong, outgoing and resourceful who made differences in their lives.
The first (other than my mother) who stands out was Nancy Chambers-Smith. She was a demanding stern leader who took the time to offer advice (maybe that’s where it all started for me). I was a young man of 23 years at that time – wet behind the ears, working my way through my career. She offered two important pieces of advice to me:
1. Never be late for a meeting (I try hard to follow this advice to be respectful of someone’s time always). Alas, I falter from time to time but I try.
2. Get involved – This one strikes at the heart of who I am as a person – As I’ve entered what I refer to as the “Mentoring Stage” of my life at 58 (really 17 with 41 years of experience), I honor her memory by admonishing any and all young people to “Get Involved” – I have had the opportunity to be on Committees, Boards and the like.
It is a real opportunity to expand what I call my circle of influence as I know there is a Circle that I can control which is central, then a ring of what I can influence is where that part of me lives and everything else well; I can only hope that my center of control and circle of influence impacts the things I can-not control positively.
In August 2019, I was able to “gird up my loins” and return to my vocation and was reunited with my work family, colleagues that I had not seen or spoken with through my unplanned six (6) month “vacation”. I am in the mortgage industry working with an Industry Utility and a firm believer that 90% of sales (like life) is all about relationships and the other 10% is delivering on “features & benefits” (doing what you say you’ll do).
This has served me well in the 22 years with the organization as I focus on customer’s needs, after all a customer may not always be right, but they are always the customer. I’ve experienced a 98% success rate with this approach but it’s the 2% that haunts me. I wonder what I could have done better, differently but at the end of the day, I’ll never be able to be all things to all people although I try.
My counterparts and I were in Austin, TX at an Industry Convention. I had made it back, a bit wobbly, but 100% cane-less… Walking the streets of Austin as I had many times before “NMO & Me” I said to myself, “self, you’ve made it,” another box checked on the road to recovering what would as Dr. Meador said, “take months and even years.”
It had taken months to get there. Unsure that it would ever happen, the long hard road traveled brought me back but I knew that there lay ahead much more work to build my stamina. Things were finally clicking.
In and around April through June 2019, the hard work began to regain the ability to sit up in my hospital bed, then learn to hop scoot on a board to get to the “beast” (my wheelchair) and finally be able to get to the sink, brush my teeth, shave, and comb my hair for the first time in months. It was liberating, painstaking and exhausting but I DID IT!
Modern technology took center stage as a hydraulic device assisted me in standing a few seconds at a time and then finally able to straighten my back after many daily attempts. But still unable to lift my legs in bed and or wiggle my toes with no feeling from my waist down. PT and OT daily first in my room (one of many as I made my way through NMO & Me) – PT retrained my legs and yet another Technologic Marvel while in PT was used to retrain my legs to lock my knees, all the while dealing with massive bed sores (Necrotic) gapping wounds acquired earlier while bed ridden working through treatments during the dark days. I was finally able to work from the beast (Wheelchair) to a Walker, then Rollator and my dear friend the Cane. My Best Girl Susan was by my side 24/7 and often asked after each PT & OT how it went, even as she was there to marvel at my progress, my response was always – It was hard.
Tests, tests and more tests – MRI’s, CT Scans and X-Rays were constant, Spinal taps occurring numerous times – Daily having 10-15 Doctors coming in and discussing various tests being sent to Mayo, Johns Hopkins, Harvard and etc., always the same response – Awaiting results.
Finally, one morning they came in and said we have good news; not cancer but NMOSD MOG+, treatable and a side issue of Hep B – also treatable. No cure (yet – I’m adding this) but a stable treatment nonetheless and we’ll look to get you to “Spain Rehab Center at UAB” – University of Alabama at Birmingham Medical Center has a world-renowned rehab center.
Much of this period of time was thankfully a Drug Induced Blur… But I have come to learn that Propofol and Fentanyl were my friends (In my drug induced state – I saw the Taj Mahal, attended parties and experienced what I believe to be the end of the world, or close to it). Poked by needles what seemed like hourly, prodded; twisted and turned – My Doctors attempted Plex twice which resulted in death or near death (Coded Twice) having a reaction to either the Albumin or the Cleaning Solution – Not sure we ever learned which it was nonetheless it was not attempted a third time.
After the first attempt at Plex, I was placed on a ventilator; had a feeding tube inserted and other treatments such as mega doses of Prednisone and IVIG were begun, ultimately it was Retuximab that won the day. During the dark days I developed a Blood Clot, had a collapsed lung and had a port placed in my neck – I was unable to move my legs and feet at all; luckily my upper body strength was a salvation. I was never an athlete in school but I took as many Weight Lifting classes as possible and was a bit of a runner early in life so during the “Dark Days” I lost some 50 pounds mostly in my legs which got to a point of looking like broomsticks. Managing my “Bikini Region” as I refer to it, Bowel Management and having a Catheter were my constant companions as is still today.
Brookwood Medical Center is a place that I have to many times, My PCP and Original Neurologist, are located there. They initially diagnosed me with Guillain-Barre’ Syndrome and we began treatment of mass doses of Prednisone – This worked, I was finally able to walk again with the help of a walker and began rehab which was great; I even got to walk from the Hospital over to the parking lot and get in and out of our car, things were looking up – Then a Flu outbreak and the started me on Tamiflu for 5 days – Three days in I crashed again; My Neurologist thankfully admitted that he as at the end of his rope and referred me to my current Neurologist so off the UAB “University of Alabama at Birmingham” medical center loading another The Adventure Continued.
In February 2019 I had been wrestling with Bronchitis after returning from a business trip and went to the Doc-In-A-Box locally as I had done many, many times before – this time was different, they gave me an Anti-Biotic and Steroid shot as before, gave a prescription of Ant-Biotics but left off the usual Steroid Z Pac (5-4-3-2-1) you know the drill, I thought nothing of it at the time but I recall this variation clearly.
On Saturday Morning February 24th, 2019 about 1:30 AM as I returned to Birmingham on a delayed flight in from Tampa this was the 5th business trip of a 7 week run and I had two more planned all back to back to back (Over Achiever – Yep); so I was unable to relieve myself (Urinate); it was awful but I got to my lake place and was finally able to get to sleep; up at around 6:30 (maybe 3 hours of sleep); I was a bit lethargic and unstable (More than usual – Hah). Met with a group at our hunt cube to discuss some spring planting and then headed back to the City House. When back home I told Susan that I felt rough and we planned to go to the Doc-In-A-Box Sunday Morning.
Sunday, February 25th I woke up and felt horrible, got out of bed; was able to get as far as the living room and collapsed; unable to move from my waist down – I was a wreck; Susan called 911 and the local volunteer firemen rushed to the house; unable to stand the two heroes got me into a wheeled cart and took me out of the house, put me in our 4 Runner. Susan and I went as fast as we could to the Doc-In-The-Box. They ran tests and found my white blood count (“Through the Roof” as someone said) higher than anyone at the location had ever seen. They called for an ambulance to take me to the Hospital for my first (of Many) MRI’s, CT Scans; X-Rays and Spinal Taps galore…
Life before I became blessed with NMO, was always fast paced moving sometimes at warp speed moving from project to project, business trip after business trip setting short and long-term goals rushing from this thing to that thing it was always such a blur getting to the next thing and the next and the next and the next with no real target, goal or real purpose.
Don’t get me wrong, it has always been a good life but something was missing, I needed compass; direction so I say now all the time “PURPOSE” in my life. Today as a person living, bigger than that “THRIVING” with NMO.