WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Hope for a Better Tomorrow
Have hope, strength and courage even if all else fails.
– AiLeng Hoevels
I wish it’s possible for my daughter Jasmin to tell you her story herself… the sudden illness which affects her life, the difficulties and drawbacks, the unbelievable pain, sorrow and suffering that she faces, the worries and uncertainties of her medical treatment and of an unknown future. Unfortunately she can’t.
A sudden cerebral palsy at the age of three left her mentally retarded. At the age of four seizures overcame her upon waking up and though medication helped, the seizures never really receded. At the age of eleven, the seizures took a turn for the worse causing uncontrollable violent shaking and twisting of her head, the thrashing of her arms and legs like they have a will of their own, the tremor and the spasm which attacks her arms, hands and her entire upper body and her feet developed spasticity. She found relief only when she sleeps.
1999 till 2003, after several hospitalization undergoing consultation and numerous medical tests and treatment, she was finally diagnosed with Spasticity (both arms and legs), Myoclonic-Dystonia specifically Torticollis (uncontrollable spasm and twisting of her head to the right and spasm affecting her upper body) and Action-Myoclonus (tremor in her hands when creating an action).
The shock as the doctors told me the illness is incurable and neurodegenerative meaning they could get worse was indescribable. The doctors never really had time to explain her diagnosis and if they tried, I felt quite at a loss facing medical terminology which I have never heard of in my life.
But through the Internet and websites like yours and others and a huge library at an University Hospital where we were stationed in Göttingen, I was able to gather, learn, compare and study the symptoms which befall Jasmin. Perhaps for me in this case English is easier to understand though I speak fluent German and have been since 29 years in Germany, originating from Singapore. Jasmin was raised bilingual and she understands some English too.
Jasmin is now 21 years old, physically disabled… sits in a wheelchair. She needs fulltime care, feeding, changing her clothes, wear diapers, toiletry, bathing etc. Nights I have to see to her to ensure that she does not suffocate or to avoid wounds becos she lie on one position only or if necessary change her diapers etc.
Becos of the continued hospitalization and her need for someone familiar to take care of her, give her attention, love and assurance, I gave up my job as Export Sales Director and began caring for her full-time. I have never regretted this decision. Whenever I look into my daughter’s eyes and see the love and trust for me compensates for the hardship, desperation, sorrow, frustrations, struggle and difficulties Jasmin and I have encountered the last ten years and will encounter as we walk together down this unknown path of her illness.
Jasmin understands more than she could speak. She could articulate about 10 words and where her well-being is concerned, she has a mind of her own despite her mental retardation.
In the last 10 years my hopes and expectations often see-sawed with countless tears of desperation and sorrow when faced with my daughter’s sufferings. When she looked at me with painfull eyes that say “Mama please help” and calling grievefully “Mama” whilst within each minute, hour and day, her head continuously spasm and twisted unmercifully in a fixed sideway position, her body, arms and legs thrashing uncontrollably and violently and there’s nothing I or the doctors could do to relieve her sufferings except give her sedatives.
Each day and night I prayed while telling myself not to give up and I tried to project all my strength and courage into her. I held her twisting, shaking head as her body, arms and legs thrashes violently under me. She lost weight and had difficulties chewing or swallowing food or drink. I spoon-fed her hourly bit by bit with baby food.
By a stroke of luck in 2003, the doctors gave her Valproat which helped considerably to reduce the uncontrollable, violent spasm and tremor although not completely. Then Botox was thankfully administered into her neck and the calves of her legs and additionally she takes Levodopa/Cabidopa. Nowadays the symptoms worsen only under mental und physical stress and burden and when overtiring.
In 2007 she developed additionally Retrocollis (backward tilting of her head) and the latest diagnosis is Spastic Tetraplegia (affecting both arms and legs) and Myoclonic-Dystonia. Her present Neurologist is thankfully familiar with Dystonia and Spasticity and recognised the Retrocollis situation.
She now goes two or three times a week to a Daycare centre for disabled young people in Wetzlar, known in Germany as the “Lebenshilfe” (Lifehelp) which is a large organisation providing support, care and help for the disabled. There she gets twice a week physical therapy and although the visit to the Daycare centre tires her a lot and I often have to give her a bedrest when she gets home but I think she enjoys it. And when she allows, once or twice a week I’ll give her arms, hands, legs and feet a massage.
Jasmin has good days and bad days or rather some mornings are good or some afternoons or vise versa. On her good days, the symptoms are less evident allowing her to chew and swallow her food, clearly articulate her wishes or even take part in as far as she can in her daily activities. However on her bad days, the symptoms worsen causing her to stay in bed, going off her food etc. Even on good days, she needs her bedrest at least twice a day.
Often I asked myself where and how it will end and how much more can she and I take the illnesses which present such challenges in her and my life. I have no answer. All I know is as her sole parent and mainspring in her life, I can’t give up for Jasmin’s sake even though I’m not sure how much more strength and courage I have left in me should her illness take again a turn for the worse.
Perhaps what hurts as well is the ignorance and careless attitude of the people in our society and their thoughtless remarks towards such disabilites or unknown illnesses has often despair me but I have never given up hope. I can’t for the sake of Jasmin. She relies on me to protect and care for her, to give her the love and asssurance she desperately needs, to fight for her rights in society and to ensure her future needs; limited and small they may be. Thankfully there are others who have been helpfull and shown understanding of our situation.
Jasmin and I found solace in music. She loves romantic ballads in English or when I read to her or tell her a fantasy story in German. When she smiles or laugh at my silly jokes or when I sing offkey, when she gives me a kiss or put her arms around me, I’m just gratefull for small mercies and for the chance to share each day of our lives together while we can.
