MY STORY:
I am Sophie Kaseregenyi, Ugandan female and lawyer by profession. I was born in Hoima district, Bulindi municipality, Kikinda village in 1974 to Mr and Mrs Kaseregenyi . I’m the 9th out of twelve children, and needless to say, I was raised in this large, loving, fun and humble family.
I went to a local school called Bulindi primary school where I completed primary level (1979-1985). I walked 6 miles every day to get there! Life was normal though, simple and lively and almost care free. After primary level I attended secondary school for both Ordinary and Advanced levels in eastern Uganda at Wanyange Girls School (1986-1990) and Iganga Girls School (1991-1993) respectively. As planned I proceeded to Makerere University Kampala where I obtained a bachelor of laws degree (LL.B) 1998.
While at law school, i worked as a volunteer with the Legal Aid Project of Uganda Law Society, an organisation that offers free legal services to indigent persons in Uganda (1996-1998) I also worked as acting administrator of the Uganda Law Society (1998) I was a young, driven, lively and robust girl. I diligently studied with an ambition to make it to the top. The above two part time jobs gave me some comfortable financial security. At the age of 25, I figured I almost had it all, and was happy with the direction my life was taking. I was also living with my long-time boyfriend. Life was good and could only get better. This comfort zone was however temporary as my ambition was to practice law to the highest level I could get to. I could certainly achieve that with further education and the easiest way at the time was to do the Bar course.
In 1999 I undertook the post graduate bar course at the law development centre where I would obtain a diploma in legal practice. This, I knew would definitely see me to a career high. However, short of two months to graduation, I suffered an accident that was so debilitating, I couldn’t continue with my studies. My career was consequently cut short.
THE ACCIDENT
In 1999 (22 years ago), i slipped in the bath room and fell. I got off the floor, and, with an unsteady gait, walked back to the lecture room. I did not pay much attention to the condition because I thought it would pass within a short period. For a while, I seemed to be in my normal healthy status. However, I gradually noticed that I was getting a bit clumsy and that was out of my norm. Things were accidentally dropping out of my hands. I started getting spasms in my hands and legs. For about two months, I walked with an unsteady gait to the lecture rooms, sometimes holding onto walls or a friend’s hand because I felt so dizzy and was out of balance.
The pen often dropped out of the hand and my hand writing deteriorated almost to childish scribbles! I suddenly became this clumsy, uncoordinated person. Walking became a difficult task indeed and i sometimes felt like my body was floating and swaying. Because I was about to graduate, I was determined to hang in there despite the wobbly walk. However, after two months, the spasms intensified, overpowering and leaving my body shaking. By then I knew something had gone terribly wrong and sought medical attention .
THE DOCTORS
I was taken through a series of tests including CT scan and MRI. There was severe Brain atrophy, cerebellar hemisphere. I had sustained spinal and head trauma. The Diagnosis was and still is Cerebellar ataxia. The cerebellum which is located at the base of the brain was traumatised and it affected my overall balance, movement control and coordination. I had lost fine motor skills as exhibited by the lack of balance, poor muscle control and clumsy voluntary movements.
Cerebellar ataxia is a disabling neurological disorder or disease and there is no specific treatment for it, with no cures for most people who Suffer this kind of debilitating movement disorders. I was therefore advised to go home and continue with Neuromotor exercises and physical therapy focusing on Coordination and balance to improve on or halt the progression of Functional decline. I was discharged and rolled out of hospital to go home and begin my new life as a person living with cerebellar ataxia.
LIVING WITH CEREBELLAR ATAXIA
My spine was so weakened that I could not even sit up on my own and had to be buckled into my seat to remain upright! I totally depended on family members to perform nearly all physical functions including walking and bathing. For some time, I was spoon fed because my hands shook so badly, I could not handle eating utensils or even pick food from a plate without spilling. I had to rely on an all-round the clock caregiver to help with all the chores. My speech became slurred, but got better with speech therapy. I lost all independence and privacy. Being unable to perform simple and private functions such as bathing or using the bathroom was very depressing. Losing my independence and privacy was really painful. My long-time boyfriend with whom I was cohabiting left the country and I couldn’t afford house rent anymore. My big sister moved me to Jinja to live with her.
From the age of 25 years, and to date, I have relied on mobility aids to walk such as wheelchair, walker or human physical assistance. To suffer from the disabling cerebellar ataxia at the age of 25, and without an income became a nightmare. I got very depressed especially because of my immobility. Many times, I prayed to God to at least give me enough strength to do something like hobbling to the kitchen and fix a cup of tea. That simple activity would be a great thing, I prayed to God.
With my career hopes shattered, the future looking bleak, all I had was depression! I literally stopped living and simply existed. Even with the bachelor of laws degree that I had just obtained, my health was poor, and with an uncertain future. This line of thought needed to change.
I was lucky to have a loving family that cares. My siblings took and still take good care of me. I rely on their generous provision though sometimes it may not be enough as they also have other responsibilities to cater for. In meagre times life just gets hard.
Many questions run through my mind, making me wonder if there wasn’t something more that could be done. Couldn’t i really not get stronger to be able to fend for myself? How long would i rely on my siblings and friends to survive? Who could I talk to? How could I forge the way forward now? These thoughts only represent thousands of people in similar situation like me in Uganda. From my twenty two years’ experience of living with cerebellar ataxia and also factual findings, it is on record that even after a devastating accident, illness, or traumatic experience, life continues with the same or even more costly human needs. Actually, PWD incur a higher cost of living yet most of them are unable to effectively fend for themselves.
Nevertheless, because I have been there for twenty two years and still counting, I noticed that not all hope is lost after all. I still need a fulltime care giver. Some conditions can be reversed or mitigated to a degree. Well, some of mine were reversed or alleviated! I can now hold a book, write, feed, bath and dress myself! Even for those that are irreversible, something can still be done to alleviate the plight of the feeble and less privileged. Somebody has to come to their rescue. All it needs is a little care, a little empowerment, and a little push, just like some jump start and before you know it, feeble people are integrated into society as independent and productive citizens. It is against this background and others, that I got inspired to start an initiative to help people living with disabling trauma like myself, hence the birth of SOPHGENYI FEEBLE CARE INITIATIVE (FEEBLE CARE)
WORD OF ENCOURAGEMENT:
May be you have suffered a debilitating accident or illness that left you disabled and you are now living with the trauma, may be doctors have said the damage done is irreversible, friends, no matter the poor prognosis, do not despair, simply pick up the pieces and start again! That’s what I’m trying to do;
I’m starting all over again, because life continues anyway. The earlier you embrace it and adapt to the new life, the more bearable life gets. I pray that God will give you the grace to overcome the seemingly impossible situation. Amen.