The invisible lodger

 

Haifa

Haifa

Ramin and I have been married eleven years this July. Three months into our marriage (back in 2003), he was diagnosed with Multiple Sclerosis. Yet even though he has the physical symptoms, we both feel this illness is ours. The impact any  such serious condition has upon a married couple is huge, as it can make or break your relationship, it can wear you down to day-in-day-out bitterness or it can create a dynamic where you learn to live within your resources and support each other differently from how you imagined.  Not having the life you thought you’d have, you learn what ‘being in love’ is really about and create a different kind of life. You learn to love through patience, thinking of the needs of the other person, making sure your needs are met while not exhausting the other, being considerate and kind, trying to be loving rather than right (not always successfully!). Love in our marriage isn’t shown through hard toil in a job in the city, where the pay-cheque buys a house, car and nice clothes. It isn’t shown through fancy jewellery or expensive holidays. Love is usually just a cup of tea and a cuddle, chatting about the day, planning a few fun things to do in the week (including where the toilets are), working together to assist my parents, making sure food is served on time and reading together. Multiple Sclerosis lives with us like an exhausting, needy, invisible lodger, yet it also  – in another reality – does not exist and we often have to overcome the inertia of our own personalities that have been somewhat changed and warped through living with the lodger. Ramin is tired from dealing with this, but also tired from the illness itself and also sometimes just tired. Ramin is often full of energy, full of beans, focused on a purpose and determined to achieve it. Not for long, maybe, but the energy is there. It’s like a laptop battery that needs constant recharging – it can do the job, but please let it be plugged into the mains for a few hours to recover, then all is well again. I get tired easily, need to sleep well and have time to myself to recover from putting out energy in the day. I don’t have the actual illness, but it has an impact on me – in more ways than I like to even admit to myself. So as well as MS, Ramin and I have Multiple Stories to tell. His MS is different from every other person we have met with the same condition because his treatment is different and because we are Baha’is. We have stories about his MS to share with you, we have stories about other people’s response to his MS, stories about courage through disability and the ongoing story of becoming parents – who knows how that one is going to end! I didn’t feel the need to blog about any of this before now. Hopefully this will help others or just be another perspective on life in the beginning of the 21st Century. I couldn’t find much on the net about MS and fertility or adoption, so this is another voice that we hope will support other souls out there who are faced with the same issues. So stay with us for the journey if you like, as we walk through a different country, hand-in-hand, without passports and a physical landscape but with a definite culture and a need for others (as well as ourselves) to learn to treat those with disabilities as equal citizens capable of giving so damn much, but maybe in a different way from the materialistic trend of the Western society we live in. Perhaps being disabled actually enables spiritual qualities to shine greater. (I also blog about music and singing under the name ‘Creative Voice‘ and you can visit my website by clicking here)

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