I don’t want to be an ambassador. I don’t want to explain to you how it feels to live like this, day in, day out. To have people look at me in confusion.
To tell of the physical pain I go through nearly every day that pushes my brain into my skull, the pressure mounting to the point where I wonder if my brain is actually too large for my skull. Will it rupture?
The bedroom is sealed, curtains pulled tight, pillows stuffed against the door to keep every sliver of light from piercing my eyes. I retreat to bed to sleep away the pain but the agony keeps me awake.
Numbness steals my left side. In the fetal position, I tremble terrified not of what is happening but of what could happen. The memories of a previous attack torment me to the point of tears.
Recovering I plan for the worst. My son’s best days without his mother – she’s home in bed. I cannot commit to a job because the illness is unpredictable.
Planning for the worst is the easiest thing to do. And the hardest. No plans are made, because I don’t know if I will ever feel well enough to do the things I used to do. My world shrinks.
Why would you have such intellect if you can’t use it? Why would you be a mother if you can’t watch your son grow? Why would you be a wife if you never spend time with your partner? Still, these are the things that keep me going.
I don’t want to have to explain to you life with chronic illness, or depression, or anxiety. And yet I realise I just have.