I have been struggling to write this post. I was going to have a break this week and I have enjoyed the slower pace. But I suspect most people who are usually on the go 24/7, like me, find a slower pace difficult to adjust to.
Let’s be honest, there are only so many hours of reality TV that can be watched before an element of dissatisfaction creeps in.
The lure of blogging and of finally being able to start processing the crowd of information coursing around my brain has been too hard to resist. So here I am. BTW this is blog post number 500 – not quite the post I intended for this milestone, but that’s the way it goes…
I suppose I better start from the beginning. Last Friday, after I poured my heart out in this post, I took my son to his sixth and final appointment of the week. It was with his dermatologist who was checking out some moles on Gilbert’s skin. Yes, people with albinism can develop moles, even without melanin (I will definitely blog about that as part of my series on demystifying albinism).
Lucky for us, there is nothing to worry about right now but we needed a photo taken to allow for comparison at future appointments. Just after the dermatologist and his assistant left the room to grab a camera I started to feel strange. I knew something wasn’t quite right.
The left side of my mouth lost sensation and started to droop. I panicked – I couldn’t get an articulate word out. My mouth just wouldn’t work. My brain betrayed me too – I couldn’t string the words together anyway. All I could do was gesture wildly towards the door and grunt at Gilbert, desperate for him to understand the urgent need for him to open the door and get help.
He was terrified. He didn’t know what was happening and I couldn’t explain. For the first time I couldn’t be his interpreter – I instead desperately needed him to be mine. His distress only made me more upset as I realised that my whole left side had become heavy so I couldn’t move from my chair. I have never been more scared or distressed or panicked in my life.
The episode lasted only a minute or two – by the time the specialist returned with the camera I was able to speak again and tell him what had happened. I was immediately placed on the examination bed while they asked me questions so they could organise help. At this stage my face had regained sensation but my left arm was tingling. I lost sensation for a minute or so in my left index finger with the rest of my arm prey to pins and needles. My leg was spared although it felt heavy and weak.
I guess I was “back to normal” within 30 minutes of the initial scare, although I felt heavy and weary and not quite right in the left side of my body for a number of hours after that. By the time I arrived at hospital they couldn’t detect any weakness at all in my left side and began to investigate a few reasons for my brain meltdown.
In a nutshell there are four possibilities being considered at present. For other The Block afficionados out there, it’s like my very own Wheel of Misfortune – none of the options are ideal.
1. It could have been a rare sort of migraine that can occur without headache.
2. It could have been a reboot of my epilepsy which can occur in those who have experienced seizures previously, although the symptoms this time were nothing like my past seizures.
3. It could have been a TIA (transient ischemic attack) which is considered to be a mini-stroke where a small clot forms in the brain but dissolves quickly, leaving no lasting effects.
4. It could be linked to Multiple Sclerosis (MS) or another condition not yet diagnosed.
I honestly though I was having a stroke. I had seen those ads on TV recently with the woman with the drooping mouth and the fire happening behind the scenes in her brain. I remember laying there while the dermatology staff soothed my terrified boy, organised an ambulance and got in contact with family and realising and accepting that I could very well die.
In that moment, I wasn’t scared for me – I figured the end itself would be quick and total (sorry for the melodrama but that’s what was top of my mind in that moment). But I was terrified for my family. I was already heartbroken at what Gilbert had witnessed and seen that afternoon. He continually asked me if I was still alive and broke out in sobs if I didn’t response to him straight away. His dependence on me is absolute and his fear at losing me was very real and overwhelming.
At the moment I still have no answers. I’m still waiting on an MRI on Friday night and can’t get into the stroke clinic for another month. I’m trying to stay positive but it’s hard. I’m just as scared as Gilbert. I don’t know if I will have any more attacks. I don’t know how serious they are. I don’t know whether I can prevent them in any way. I don’t know how I’ll ever manage going back to normal life.
I don’t know anything at all anymore.
All I can do is wait for the MRI and hope I have some answers soon. As I understand it, it’s a process of elimination and may take some time to resolve. In the meantime, I can’t drive for at least the next two weeks as a precaution and I’ve been put on daily aspirin in case it was a TIA. I’ve also been taken off my normal oral contraceptive pill as this can thicken the blood and lead to an increased chance of clotting which is a factor in a few of the options on my very own Wheel of Misfortune.
I am grateful that my husband is with me – he is my rock and has helped distract and deflect and deter the pressures of life over the last few days. I am thankful I have family on standby ready to help when needed. I am grateful for this rare chance to rest and recover.
I am scared. I am frustrated. I am worried. But I am thankful to still be here and grateful for everything that I have.
Linking up with Rhianna for an overdue Thankful Thursday.
Do you want to become a more positive special needs parent?
Sign up to grab your free guide now! Full of practical advice from a fellow special needs parent.