Ameena Mehtar – Her story so far
•On the 3rd of October 2006, she kisses her husband and son goodbye, and leaves for work in the morning.
•At about 7 20am, she is involved in a car accident.
•It takes paramedics about an hour and a half to get her from the scene of the accident to Lenmed Clinic only 2km away.
•She is pronounced dead on arrival and the doctor even says that there is nothing they can do and that she is finished. I guess he underestimated the power of Allah (God).
•She is rushed to ICU in a coma and is placed on a ventilator.
•Subsequent x-rays and tests reveal that she has suffered a traumatic brain injury, which included swelling and hemorrhaging, a fractured hip as well as internal bleeding to her stomach.
•Her head injury was termed as a diffused axonal injury, which means that it was not specific to one area of the brain, but in-fact a few areas.
•She was given the lowest possible rating for any patient on the Glasgow Coma Scale which is used in head trauma / coma patients.
•After 2 weeks, she is taken off the ventilators and one eye opens.
•During her time in ICU, she has 2 operations. The first is a tracheotomy, which is a hole in the wind pipe to assist with breathing and the second is a percutaneous gastro copy, which is a hole directly into her stomach for feeding.
•She starts showing good signs of recovery but then on the 25th of December 2006, she develops severe aplastic anaemia as a result of an allergic reaction to the drugs Epanutin and Epillum. These are used to control the epileptic fits which is common after a head injury. She also develops a chest infection that turns into pneumonia. She is put back on a ventilator. At this stage all her bodily organs go into shock and the nurses in ICU call the family in the early morning to tell us to come immediately as they do not think that she will survive the day. I guess they too underestimated the power of Allah (God).
•In total she spends 4 months in ICU and her bill at Lenmed is one of the highest single accounts ever at the hospital. A total of R604 000. She had only taken out a medical aid a few months before her accident.
•At the end of January 2007, she is transferred to the Netcare Rehabilitation Hospital in Auckland Park, where she remains semi-comatose for a further 2 months.
•Therapists there are unable to work with her due to uncontrollable head movements, epileptic fits and no meaningful response from her.
•At the end of March 2007, she is discharged and comes home.
•She requires the assistance of 2 full-time, live-in nurses for a further 6 months.
•On her 27th birthday, we decorate her room with flowers and balloons and even bring in a cake for her. She attempts to blow out the candles but is too weak to do that. She has to learn to do so many things we all take for granted.
• In July 2007, she has another operation to close the trachy and remove a fistula that has formed on her windpipe.
•On the 4th of August 2007, I walk into our room and I say to her, “I Love You”. She responds by saying, “I Love You Too”. I can’t believe she has responded, so I say again, “Ameena, I Love You”. She responds by saying, “I Love You More”. This was something that she used to say before her accident. There was no sound when she spoke.
•Two weeks go by before she tells us that she cannot hear anything. She has been lip-reading during this time.
•Subsequent hearing tests at Lenmed Clinic and an Auditory Brainstem Response test at the Donald Gordon Medical Centre reveal that she has suffered a profound loss of hearing in both ears. The tests reveal that she hears nothing at any decibel level. Nothing wrong with her ears, or her cochlear or the main auditory nerve. This is much deeper at the brain stem itself.
•In October 2007, she starts rehabilitation therapy at Headway in Hyde Park once a week. She continues there for 2 months and then goes back to Netcare for treatment 3 times a week. During this time, she uses a communication board that I made for her with numbers and letters of the alphabet and key words which she can point to.
•On the 22nd of November 2007, we hear sound when she speaks.
•In January 2008, she has Botox injected into her left forearm and right calf muscle to reduce the spasticity in these muscles. After the treatment, she is fitted for a hand splint from the Rose-Acres Clinic in Germiston which she wears daily and at night, and also has a special leg-brace made for her to help with standing and eventually walking.
•After 6 months of intense therapy, we decide it is too costly to make the trip to Netcare 3 times a week, so we take a brave decision to stop therapy there but continue her treatment at home. We live on a farm outside of Fochville, just off the N12 towards Potchefstroom. Currently she receives OT once week. Her OT comes to our home. She also has recently started again at Netcare on a machine called the Lokomat. She uses this machine 3 times a week.
•For those who have read about or studied brain injury, her recovery has been nothing short of remarkable. Her injury was so severe that Dr’s thought that she would be confined to a wheelchair all her life. She has a point to prove and is slowly proving all the doubters wrong.
•She has a steely determination and a will to get better. Her memory is intact.
•She exercises daily on a gym-trim or exercise bike. If she is not doing this, then it is standing or sitting with assistance to get her muscles strong again.
•Dr’s, nurses, therapists, family and friends are all amazed at what she has been through and how well she is doing now, but we are under no illusions as to the long road ahead of her. Quite possibly, this will be a life long journey of recovery.
•She does get depressed, angry, sad, and stressed-out. If you were in her position, you probably would too. She is a fighter though, and because of her, so many of us have learnt so many valuable lessons in life. She says, “Don’t ever take life for granted”.
•Lastly, I must mention Mohammed, our son, who has also suffered so much in his own little world. He was only 2 years old when her accident happened and he has no memories of what his mother used to be like. It seems so un-natural for a little boy to have had to grow up doing things for his mother instead of his mother doing things for him, yet, he is her strength and the reason she does not give up. Thank you, my son, for giving mummy a reason to live.
A day in the life of Ameena Mehtar
•I could not possibly tell you everything that could go wrong after a brain injury, but what I can tell you are the problems I have and face on a daily basis.
•For starters, I am unable to walk and spend my day in a wheelchair, but I believe I will walk again someday.
•I have lost my hearing and rely totally on lip-reading. For 2 months after my accident I used a communication board that my husband made for me. I would point out letters of the alphabet and key words so that I could communicate with everyone. Now I speak but people still don’t understand me. Not all the words come out right and I have had to learn to speak slower. That is difficult for me as all my life I used to speak fast.
•I never knew what headaches were and now I get them on a daily basis. Severe headaches that feel as if my head will explode.
•I had to re-learn to chew my food, to swallow, sip from a straw, hold a cup, brush my teeth and to write my name.
•Everything I do is in slow motion.
•I can’t bath myself since my accident or go to the toilet on my own. My husband helps me with those things and all other aspects of my personal grooming. I am unable to pass stools on my own, and I suffer from sever constipation. Once a day, my husband has to don a latex glove and do a manual evacuation of my stool.
•I am 31 years old and I wear napkins. I cannot do the things that I was so passionate about like cooking and baking as our kitchen is not wheelchair accessible. So now I watch while everyone has to prepare meals and see to my needs. I wish I could walk so that I can pour myself a glass of water, make myself a cup of tea and see to my son’s school lunches. Sometimes I can’t pick up the food in my plate as the pieces are too small, so my husband and son will feed me.
•I can’t do so many things for myself so how do I do it for my son. This is what kills me inside. The pain of not being able to do for your child is indescribable. I still try to do the best that I can do for him. Sometimes I think to myself that it is better that I have all the pain and suffering and inability and my child is healthy.
•I have spasticity in my left hand and right foot. My muscles are pulling constantly.
•I can stand holding onto something or someone, but I cannot let go or I will fall due to my balance being affected.
•I am 31 years old and my physiotherapist is teaching me how to crawl, and believe it or not, I even have difficulty doing that.
•My father-in-law and my husband alternate and take turns taking me to Netcare Rehab in Auckland Park 3 times a week. Recently my father-in-law has not been well so my husband has had to switch jobs in order to accommodate me and my needs. This meant taking a drop in salary and benefits.
•Sometimes, the thought of having to get up and face a new day is so daunting but I have come a long way and can’t give up now.
•I have eye problems too. My right eye does not close completely when I sleep, resulting in infections, red eye or dry eye conditions. I have to use eye drops during the day and anti-bacterial ointment at night. My left eye has become a lazy eye and is out of focus so I occasionally wear a patch over the right eye to give the left eye work to do. This puts a strain on the good eye and results in headaches. Since my accident, the damage to the brain has also meant that I am unable to tear naturally. I have not cried in five and a half years. Not even 1 single tear. God how I miss being able to do even that. Women especially, know that you feel much better after a good crying session but I don’t even have that ability.
•I wonder during the day how different my life would have been. I have so much time to think as my husband goes to work, my son is at school, and parents-in-law have their own work/chores to do. I feel so alone but I know I am not alone. My creator is with me always. People lost all hope. Some thought I would not make it but here I am telling you my story.
•I studied at RAU and have a BA Law degree. I had a few more subjects to complete my LLB when I had my accident and my life took a different path. My dream was to go on and become a judge. How I wish I could help my husband with all the bills. I know he has spent every cent he had on me and he still continues to cut himself short but makes sure my needs are taken care of. I am no fool. I see the strain on his body and the worry in his eyes. Things are getting tougher for him. Everything is on the rise but not his salary.
•I read a lot and try to immerse myself in books. Anything and everything. Mainly motivational books, self-help books, true stories. I have to stay positive. Thank heavens for Blackberry. This is my only means of communication during the day and I have learnt to keep in touch with family and friends via sms and bbm. I watch how others communicate and sometimes it is frustrating to see how easy it is for them and so, so difficult for me.
•When I meet people, I put my hand out to shake theirs and they always see a big, bright smile. I have become an expert at hiding the unbearable pain I feel, physically and emotionally. Fortunately, I still have my faith in the Almighty.
•I have met so many wonderful people since my accident, good and honest, kind-hearted souls who have shown me the meaning of love and what it means to be a true human being.
•I will not give up or give in as I know I still have so much to accomplish, so many dreams to fulfill and I know so many people are counting on me to see this through.
•My dream is to walk again. Get my independence back. Feel like a woman again. Feel like I belong and offer help to others that are not as lucky as me. I do know that I have been given a second chance and I intend to take it.
I HAVE A DREAM
I dream of a place where disabled or differently-abled people of all ages, can come an experience something out of the ordinary. A place where they can be free to go anywhere and do anything. A place that offers these special individuals a chance to experience what we all take for granted. And WE DO take so much for granted. Our abilities to see, hear, touch, taste and smell are things that people all over the world only dream of. For them, it is a struggle everyday. Every single day is a challenge. If you have a child or a loved one that has some sort of disability, then you know exactly what I am talking about. Sleepless nights, heartache, financial worries and a constant search for a cure. For many, the stigma attached to having someone in your family who is different from the rest, is something that goes unnoticed and many people are lost, not knowing what to do or how to cope. The strain it puts on families becomes unbearable at times, leading to problems in the home. Unfortunately this eventually leads to separation, divorce, depression, drugs, etc. We can all only speculate the untold feelings of the disabled person in this sad but true scenario.
I dream of a place where people can feel comfortable to talk about their problems to other people who have similar stories to tell. A place where they can discuss openly with professional people their experiences, shortfalls, difficulties, hopes and dreams for their loved ones affected with the disability. A place to learn, a place to gain more insight into what is wrong and what can be done to improve the lives of not only their loved ones, but themselves as well. A place where they can let it all out and realize that it is ok to cry.
A place where children are free to play, where they can touch and feel a variety of animals, plants and other things that will stimulate their little minds melt their hearts and just put a smile on their faces. Pony rides, petting a number of animals, indoor and outdoor games that the entire family can participate in. Jungle gyms, playrooms and perhaps even a heated pool where the disabled person can relax in. We all know how good water therapy is. Trained professionals on hand to massage the aches and pains away. Lunch under trees in park-like surroundings, braai areas, namaaz rooms, clean ablution facilities and a safe environment for one and all.
My dream is to establish this haven on the farm where I live with my husband, son and in-laws. We are situated just 35kms from Lenasia and an easy hour’s drive from Fords burg / Mayfair / Roshnee / Azaadville. I have made my Niyyat. Now you make yours and help me to make this happen because I will need all the help I can get.
There are a few things that I would like you to mention on air if possible. Firstly, this will be a non profit venture. We feel there is a REAL need for this and it is purely for the benefit of the disabled community. Secondly, anyone interested in assisting her will be welcome to view the farm where we plan on starting this haven. They can contact Ameena via bbm or whatsapp or they can contact me, Rashid Akhalwaya, on my cell no, 0836951876 or email me at Rashid.Akhalwaya@gmail.com. Furthermore, assistance can be in many ways, not necessarily monetary value. Since her accident, we have met so many families affected by some loved one in a similar position as Ameena and we feel that so much good can come of this. We have so many ideas but would like the community to submit their ideas as well so we can try to cover all aspects and make sure all their needs are met. As a community, I feel that we can make this dream come true, InShaAllah