The Adventure Continues

Firstly, thank you so much for taking the time to read my virtual scrawl it’s been a long time coming. I write with the hopes of encouraging, challenging and empathising with someone, anyone, who is trying to navigate this life and with the trials and triumphs that come with it.

So let me introduce myself — My name is Remi, I’m 31 years old, I’ve been married to my beau, Dafe, for 7 glorious years and we have been blessed with two mini Queens — Ramiah, 5, and Arielle, 22 months. This particular blog will be uncharacteristically long as I have to give you the full back story of my journey to this point, so bear with me.

The story so far…

As you may or may not have guessed from my domain name, I have Multiple Sclerosis.

Writing that sentence is a BIG deal for me. I deleted, reworded and rewrote it a few times before just leaving it be and I’ll try and explain why. Let’s start at the beginning.

I started experiencing symptoms in the Summer of 2005, during the exam week in my first year of University. It started with numbness in my left leg, which a few days later developed into my whole left side, below my neck, losing all superficial feeling. I wasn’t paralysed, I just couldn’t feel temperature or touch — I say just, but it was very scary. Ladies, can you imagine literally one half of your body not feeling anything — one foot, one side of the pelvic area (yes one side), one breast! Whilst that was going on, the other side began to become weak (but not numb) to the point of not being able to hold a fork with my right hand and of course not being able to walk. It’s difficult to comprehend.

My mother came from London to stay with me in the hospital. A little after she arrived, as she was sitting by my bedside, we were talking and then her face suddenly had this confused look.

“Remi, you can’t feel that??” she asked.
“What?” I replied.

She had been pinching me. Hard.

These symptoms amongst others came and went, untreated, throughout Uni. Worst during exam periods, I battled through it all with support from family and friends and prayers — and I graduated! It was with a 3rd, to my disappointment and shame for many years, (We’ll get why I didn’t have to worry about this later), but I graduated nonetheless.

I was finally diagnosed with Relapsing Remitting MS early 2008. A neurological disease where the body attacks its own nervous system, ‘thinking’ it is attacking a foreign invader. The scars that it leaves on the nerves, disrupts the transmission of messages through the body. The consultant at the time said it was uncommon for a black person to have it and that unfortunately there was no cure.

I came home and googled “MS” — big mistake — I saw the worst cases; Stephen Hawking type images and other stories, which I shoved to the back of my mind and I carried on with my life. Working, going out, the occasional deliverance service, just being Remi. Mummy and Daddy continued to pray and fast, Daddy signed up to an online newsletter by a lady who claimed she had beat MS and gave several tips and advice on what one should do, all of which were forwarded to me on an almost daily basis. I’m sure there were many tears and prayer sessions they kept from me, but, I was young and invincible (but mostly indenial). As most of the time I was fine physically, the MS was there but not there, it wasn’t my MS.

When Dafe let me know of his seriousness about our relationship, I instantly told him about the MS and tried to convey what he was letting himself in for and asked of he was sure, to which he replied “I’m not going anywhere”.

So romantic yet so naive of the both of us.

We got married in 2010, the same year I started treatment for the MS. He watched me inject once a week on “Dreaded Thursdays”, helping my push the needle in when I couldn’t face it. All the while I was also going to Uni again, training to be a Secondary School teacher — for someone for which stress was a trigger, I had made a questionable career choice. It was hard but I made it and got that qualification too. I then went on to get a teaching job from my first interview!

It was a Saturday, I was ‘late’ and so I took the test et voila it was positive! I called mummy (mine and his), daddy and our sisters to share the good news. THE NEXT DAY, Dafe witnessed my first major relapse. I couldn’t get out of bed, my left side had lost power. I was scared, he was scared, I cried, he cried.

My MS nurse later said that in one month I had done 4 of the most stressful things there are to do in life — Gone on holiday, moved house, started a new job and gotten pregnant with my first child.

It was really bad.

I was 5 weeks pregnant, I had lost the ability to speak, half of my face was non-responsive, so I looked like I’d suffered a mini stroke. I couldn’t walk, feed or bathe myself. My consultant came to speak with me, he told me that he was going to put me on a short course of powerful intravenous steroids, and that it was likely that I would miscarry (!). He stressed that though it was my choice, he considered it the best option. This was horrific for me, not least because, for as long as I could remember I had always carried a deep fear of not having a child, because of something that was told to my mother when I was a child.

I couldn’t talk but deep down in my spirit I sang, I praised as hard as I could. I continued treatment. Dafe prayed and declared. My mum travelled from Nigeria. I continued treatment. My pastor at the time came to my bedside and prayed with us. I got better quickly and within days I was talking, then moving my arm, then my legs — I got in trouble with the nurse for making my own way to the toilet and falling. Over the course of 4 weeks I made a full recovery — and left hospital with Ramiah intact.

I had more big relapses after then; soon after Ramiah (Yahweh is exalted) was born, (leaving an 8 week old is the worst). Again after Arielle (Lioness of God) was born and other minor ones in between. I even dictated letters to my poor darling sister to write for me and give to my family if anything happened. Horrible times.

Amazing things have happened along the way too; promotions at work for both Dafe and I, buying our own home, coming to know God’s love for us like never before, discovering talents and passions. He really has done ‘more than I could ever ask or think’. I have been so blessed.

I went through MANY years of saying ‘I have been diagnosed with MS instead of “I have MS”. You see, I had been taught many things in church with regards to illnesses and afflictions that confused, frustrated and strengthened me. Wonderful pastors and even GPs in my surgery (whom I asked because I knew they were Christians too), spoke of their convictions about illness. Responses and preachings ranged from; suffer as Christ suffered with prayers to God to give you the strength to endure — to — reject it, it’s not your portion, bind and cast it back to sender! All said with with as much certainty as each other and all adding the tracks to that would continue the emotional rollercoaster.

I’m still on my journey with it all, but what I do know is that He has brought me through so much and continues to do so, and I look forward to sharing it all with you.

…Remi xx