The Calm Before the Storm…
Family is a blessing at the best of times but for those with epilepsy, it perhaps becomes more so.
I was fortunate, my experience growing up with seizures and family was the best that I could possibly have had. My mum went above and beyond to do all she could to try various treatments both orthodox and alternative. Even at my grand old age of thirty-six she still remains my statue of wisdom, knowledge and unconditional love. I run situations by her, ask her advice and receive complete honesty in return – whether I want to hear it or not! Whilst I have taken responsibility of my condition as an adult, I value the strong bond that epilepsy created between my mum and I.
My seizure history is pretty colorful and varied. Seizure types included: myoclonic jerks, tonic clonics, hallucinations and after the age of eleven the absences began. I continue to have absences and occasional myoclonic jerks but the tonic clonics are under control and really, from the age of four, for as long as I can remember, my mum was and has always been my rock.
One of the aspects associated with my sister that I felt guilty about for a long time but have come to terms with, is that I became the focus of the family due to my needs. My sister was patient, loving and understanding even though she was only three years older. I believe it attributed to creating an environment in which we took one day at a time knowing we were all there for one another because we were bound with love.
All available money was funneled into alternative therapies alongside the medication issued from the hospital. Food and nutrition was explored in depth with a significant degree of success. I had numerous allergies when I was younger so I would regularly be tested but food remained limited. My mum would research and cook different dishes in order to try and give me tasty alternatives. Thirty years ago, there wasn’t the availability of gluten-free, dairy free, wheat free products etc., this made variety a lot harder and required extensive research along with trial and error.
My mum also trained as a massage therapist and subsequently began a business in order for me to receive a massage weekly, as improvements had been seen with my seizure activity. Being in a relaxed state for my brain worked absolute wonders. Around the age of eight or nine, we had explored so many different options that my epilepsy was fully controlled by massage, nutrition, homeopathy and acupuncture. This continued till I was eleven when the hormones kicked in and then all hell broke loose!
Despite the change, it is wonderful to think that through such dedication my mum enabled me to physically be in the best health that I could be and instilled the attitude that anything is possible if you’re open and willing to do the research. There were of course therapies that didn’t work but I am so grateful that my family passed on the generational saying, “If you don’t have your health, you don’t have anything.”
On the other side of the coin I have met people whose families have not been as understanding. In many countries, epilepsy sufferers are excluded and shunned by their families. In the west, there are family members, employers, partners and friends who remain fearful due to lack of education and knowledge. It’s easier to just ignore what you don’t know, right? Well, actually no.
Once again, we live in a world where much needs to be learned so we can change, understand, be tolerant and respectful of others. We can love and care for people in the way that is needed but that can only be obtained through positive values, security and love from our families.