What You See When You Can't See by Zena Cooper

Author:Zena Cooper
Language: eng
Format: epub
Publisher: Hay House
Published: 2019-08-06T16:00:00+00:00

CHAPTER 7

More Abled Than Disabled

As the pen lingers a few inches above the medical form, we groan in unison at the dreaded questions: ‘Any Disability?’ and ‘Any Epilepsy, Heart Conditions…?’ Our dilemma: neither of these is technically applicable and we need another box. My daughter finds one – ‘Any other information’ – and writes down ‘Marfan syndrome’. As we know, this will inevitably lead to more details being required at a future date. Declaring a connective tissue disorder that potentially affects such a range of bodily systems can be so frustrating.

My daughters Rasheena and Korisha had been helping me with forms for quite a few years. Any school consent forms, medical forms or such that needed filling in, they were my go-to angels. They could see the lines and spaces, whereas I just saw blurs, so they helped me to complete them and never once complained. Never complained, that is, until these questions came up. The catch-22 is that although Marfan syndrome itself is not classed as a disability, nor is it classed as good health. Words such as ‘prone to’ and ‘at greater significant risk’ were often thrown around, so we always had to declare our condition on all forms. We carried a card around with us saying that as a Marfan patient we were more at risk of aortic dissection (a tear in the heart’s major artery), retinal detachment, joint dislocations, pneumothorax (collapsed lungs) and other scary-sounding stuff. Many of these risks are rare but can happen, so I spent many years researching reports and guidelines on what we should and should not do, and used this information to educate professionals in the children’s lives when drawing up care plans in case of emergencies.

Marfan syndrome limits certain activities. Many contact sports are not recommended, along with diving, skydiving, lifting excessive weights and any other activities that could increase the likelihood of anything from a subluxated lens to an aortic dissection. The frustrating thing was, though, that these were more of a ‘just in case’ scenario rather than a known disability. From the complexity of the disorder, disabilities could arise. The lens subluxation and dodgy eye structure I’d been born with made me partially sighted from birth and now registered blind. Others with extreme hypermobility and joint issues develop into a disability on mobility grounds, yet there are many who suffer a multitude of differing connective tissue issues – and these people are not classed as disabled. It was far from straightforward.

As three out of four of my children have Marfan syndrome, we have spent the last 20 years in and out of outpatient departments. From ophthalmology to cardiology, paediatrics to orthopaedic departments, we have done our rounds. Accident and emergency departments have also been a favourite haunt of ours, especially for my accident-prone son, Zaidley – with broken bones, head injuries and ‘just in case’ checks. As soon as an accident happened in school, we were always phoned to get the children checked ‘just in case’.

My two sons,

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