Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
My name is Pauline Richardson nee Grant. I grew up on a farm in Jamaica. My mom, being a cheerful giver, would invite people over all the time, always making sure they were well fed. My parents instilled in us strong values, the importance of family, faith, and community. My parents’ caring and compassionate attitude might have contributed to my career path in healthcare, working as a frontline registered nurse for many years until my entire world was uprooted in September 2019…
First Symptoms
I believe my first symptoms appeared in 2015. I remember reporting numbness to my lower lip. I brought it to my family doctor’s attention. He was concerned, so he suggested I go to my dentist, who found nothing wrong.
About a year later, I felt numbness in my left nipple, but I ignored it since it was sporadic.
In early 2019, things progressed. My right arm, hand, and fingers started to go numb intermittently while completing my usual daily reporting for work. I would also feel a tingling sensation to the same arm, which traveled to my fingers. I assumed it was from the long hours on my laptop. My job requires a lot of reporting and I spent a lot of time typing.
In liaison with my family doctor, I was referred to a specialist who diagnosed me with carpal tunnel syndrome. This diagnosis confused me because it hadn’t impacted both hands. I was offered surgery but I declined. Instead, I opted for a brace for my right arm.
Weeks of Discomfort
I love my home country of Jamaica. My husband and I make an annual trip to see family and friends to just ‘chill’ but in 2019, I didn’t get to enjoy my time like I had before. While I was there, I suffered from serious constipation, a condition that suddenly appeared. Despite all my efforts I just couldn’t empty my bowels. As a nurse, I knew what remedies might work, but the condition would not resolve itself.
I returned home and immediately saw my family doctor who assumed I was stressed, but that didn’t make sense to me. I had just returned from vacation. I was prescribed laxatives and ordered a week off work. During the week off, I experienced intermittent numbness throughout my body so I decided to try complementary therapy: naturopathy, osteopath, and massage therapy but still there was no relief.
For the next two weeks I endured intense constipation. One morning, while on the job, it got worse. I felt a sudden numbness around my rectal area while straining to pass a bowel movement. I know these details aren’t pleasant but neither was the experience. As the day progressed, that numbness started to radiate bilaterally to my lower extremities. I reached out to my family that same day and she immediately referred me to a neurologist.
Unfortunately, the following day, on just an average Saturday, the numbness became unbearable. Being a nurse, I need to be an active participant in my healthcare. I need to be in the driver’s seat, so I can address these mountain wave disturbances that were ever present. I felt forced to take an alternate direction. I fastened my seatbelt because I was going to the ER reluctantly.
At the ER, I informed the team of my symptoms. An MRI was done to the lumbar spine, CT scan of the brain and abdomen, and an ultrasound of the abdomen but all findings were unremarkable (except for fecal loading to my right upper quad, which was expected, thus I got a fleet enema with ineffective results). As I stayed in the ER overnight for observation, I was seen by three doctors but my mysterious case was unsolved. I was discharged with a referral to see a neurologist.
Sleep Deprivation
It had been weeks since I had slept properly. By this time I started to experience neck pain from sleeping upright. From three o’clock onwards, I sat in a chair, making frequent trips to the bathroom. The constant urge to pass a movement led to no results and immense frustration.
Periodically, my legs would also go numb with a heavy sensation. I liaised with a family friend (a neurologist in Jamaica) and he also directed me to see a neurologist right away. Waiting to see a referral takes time so I went back to the ER.
For the second time, I headed to another ER and I brought my discharge report. I was reassessed with similar procedures. The results were inconclusive. I was discharged after approximately twelve hours, again with more laxatives.
Even though my husband didn’t say anything, I knew his sleep was impacted. After I was discharged from the ER, I decided to spend the night at my sister’s place. Illness impacts more than just the patient who is inflicted with the suffering. It affects the entire family.
Being sleep deprived myself too, I was hoping for a good night’s sleep, however, another symptom reared its ugly head…
Third Time’s a Charm
It was just under 24 hours and I was back in the ER. This time, I headed back to the same ER I was at earlier that day. I had returned due to serious urinary retention. When I arrived at the ER, I saw one of my friends at the triage desk. As luck would have it, she just happened to be on shift as the charge nurse. The familiar face was a blessing in disguise.
My friend escorted me via wheelchair to be reassessed. I was in agony and I felt like my bladder would explode at any minute.
As the ER doctor assessed me, she noticed that I had just been discharged the day before. I was baffled by her audacity to accuse me of not following the doctor’s orders, which were to take the laxatives. I tried to be patient as I explained my current situation. I knew my full bladder was a separate situation from the constipation. The doctor finally ordered a bladder scan, noting the 1.2L of urine not going anywhere. I was immediately catheterized and oh, what a relief!
I was finally assessed by an on-call neurologist. After quickly reviewing the notes from the first 2 ER visits, he suspected “Devic’s disease”. He ordered STAT IV steroids and other procedures, including another MRI except this time with contrast dye and of my entire spine.
After the IV steroids, my neck pain went away instantly. Feeling helpless, my husband could only bring me soup. I was grateful for the nutrition and being so exhausted, I drifted off to sleep. I was woken to the realization that I was being admitted for further investigation and a course of IV steroids. I also discovered that I had lost the ability to ambulate.
Relying on my Nursing Instincts
Honestly, at the time, I did not realize the severity of my symptoms much less what the diagnosis could be. This was shocking to me because of all the years I have spent in nursing.
I have always been a calming force, a coping strategy from my professional experience. I have learnt that panicking leads to more panic and things get worse. All I know is that this idiopathic (rare) disorder arrived in the prime of my life and hit me like a full head on collision. Yet, I never felt the urge to scream or ask “why me?” This behaviour helps no one, even when it all feels like an out of body experience. NMOSD/TM is tough without judgment. I wouldn’t wish NMOSD/TM on my greatest enemy, and I don’t have one. One thing I know for sure is that tough times don’t last but tough people do.
Support Is Everything
I broke the news of my official diagnosis to my family and friends while I was still in the hospital. There was a lot of sadness and tears but I told them that I’d be fine and that it will be okay.
After 2 weeks in the hospital, one of my older sisters and her husband surprised me and flew in from Jamaica. Another sister and her family from across the US and Canada also came to see me.
When I was finally discharged, I was thrilled. With my lifeless lower extremities, I was escorted home via a transport team composed of my husband, a brother in-law and my sister. I was surprised to see my home full of relatives there to greet me. It was a true homecoming.
As we prayed together that weekend, I heard a voice in my head say, “Pauline, stand up!” That was a frustrating moment because I couldn’t. I remember crying, my family looking on. Like I’ve said many times before to them, they said, “it’s going to be okay,” and they were right. With aggressive physiotherapy, occupational therapy, and my family as my cheerleaders, I am now able to walk again.
My brother resides in Calgary and he enjoys working a lot. I was touched when he took time off and surprised me with a visit as well. He went out, did the groceries, and cooked, which is one of his passions. Having him there to carry on like we always have was a blessing. As he cooked though, he suddenly burst into tears, expressing all the frustration I had been feeling. This is how connected my family is to me. Eventually our tears turned into laughter.
I feel so grateful to have the support of my entire family and friends. Oftentimes my emotions are overshadowed by their positive support. Their numerous visits to me, both in hospital and at home, made things more bearable. In total, I was hospitalized for 4 months but it never felt that long.
Faith and Family
I am part of a large tightly knit community and we are extremely family-oriented. I am married to an amazing man I met some 35 years ago and I am the mother to three wonderful children who are adults now. I’m grateful for my solid marriage, which gave me a strong foundation to start from when things got challenging. I am also deeply grateful to my sisters who were my radicals.
As a family, we have always relied on our spirituality especially when the critical mind tries to change your thoughts. God has given me this space, so now I get to own it. The Lord has brought me to this new reality, and I know He will also bring me through it. Without God, I wouldn’t be able to cope with everything as well as I do because it’s easy to develop self-doubt. Instead of succumbing to those negative thoughts, I’ve chosen to reach out to my God, my family and our community.
Self-talk is my best imaginary friend. When the inner body feelings become challenging it is like a Rubik’s cube. Though chaotic, I choose not to give in to that feeling because I know chaos loves attention. I try to meet every challenge with an attitude of “how can I tackle this?” and I hope I’ve motivated you to do the same. I have developed a psychological flexibility to my new norm to deal with impromptu disharmony amongst my body parts and/or system. I rise above the doubt and fear, with God as my greatest physician.
My favorite saying is, “this too will pass” because everything does, even bowel movements eventually.
Gratitude
I must edify my earthly physicians, especially my neurologist who has been at my bedside everyday until my discharge. I know I can call on my neurologist and family doctor anytime, day or night, and they’ll be ready to help me.
To my neurologist who went above and beyond, who got me the right treatment and even connected me to another intelligent neurologist, one who has an interest in The Sumaira Foundation’s mission, I thank you.
I am ecstatic to be part of this diverse and inclusive community/organization and I hope to lend my voice for this worthy cause. I believe sharing our knowledge will impact change for the better.
