It took almost a year from experiencing symptoms to being diagnosed, but since then Hanin has had some success with medication to reduce the symptoms, and he receives much-needed love and support from family and friends. Despite his lack of mobility, and having to give up his job as a pharmacist, Hanin remains positive about life and has coping strategies to make the best of his skills.
I felt like a trapped brown bear. I was sad and angry, but when I knew that I was stuck… well, guess what I did? I turned myself into a white bear. My MS Society helps trapped brown bears, like me. They know what they have lost, but the Society helps them see the beautiful things they still have.
I grew up in Amman, Jordan’s capital, and until I was diagnosed with MS, I had a busy, active life. I worked as a pharmacist for 17 years, and was always coming and going, visiting friends, seeing my brothers, and so on. Now, I cannot even read since my concentration isn’t very good, and I can’t stand for long. Walking is difficult, and my hands are weak, so I can’t write either.
It began 18 or 19 years ago. One day my left arm tingled, and it felt numb and weak. I thought I must have hurt it during a fall, but I couldn’t remember falling. Over eight months, I saw three doctors and they gave me anti-inflammatories! But the symptoms got worse – the tingling and numbness spread across my whole body. My balance was a disaster, but I didn’t notice because everything seemed to be going wrong. The peripheral nerves in my left hand were tested, but the tests were fine so I was referred to a psychiatrist. Only when writing became very difficult was I sent to a neurologist and received an MRI. I was diagnosed with MS in 1993, just ten months after graduating from university.
It isn’t easy, but my family help a lot, they give me so much love. My mother is around all the time, she manages the house, the cooking and cleaning. And my brothers make their best effort to meet my needs. At school reunions, my friends do their best to find somewhere without stairs, somewhere that will be the most comfortable for me. They visit me a lot, I feel much closer to them than before.
When I was still working, my boss made sure I didn’t have to lift heavy things, or even do any writing, and he made sure I had a chair to sit on. I worked until movement became too difficult, until I couldn’t stand for more than five minutes.
One way I cope with MS is to make walking strategies. I find the shortest routes. I take breaks, even sitting on the sidewalk or the stairs for a rest. For longer walks, I use a walker with wheels.
The medication makes life a lot easier, it takes away the stiffness and numbness. The studies say doxycyline isn’t effective, but I think it helps me a lot, and even though I had a bad relapse after taking it for three months, in the end I think modafinil is a miracle. The Jordanian Royal Divan helps pay for the medicine and through the Jordanian MS Society I can get physiotherapy too. It makes me tired – but these days just walking around the house can tire me out.
I make strategies to get around. I make a plan so I take the shortest route, and on the way I take breaks. I sit on the sidewalk, or the stairs. I bought a walker with wheels to help with the longer walks.
For others living with MS, I would say when you think about your trouble accessing some places, consider that some people never arrive at all. When you think about your difficulties with movement, remember some people lack movement completely. When in pain, remember some people cannot even feel pain.
Now that I can’t work, I find other things to occupy myself. I write poems and stories for children in Arabic. Rather than think about what I’ve lost, I appreciate what I have.