Learning to Live Without you

By the Ahmed Family.

On a bitterly cold and icy afternoon on Friday, January 18th 2013 our beloved daddy ji, Ghulam Ahmed, was on his way to read Friday prayers at his local mosque, when he unexpectedly tripped on an uneven slab on the pavement and consequently slipped on some ice. A tragic accident that changed the course of his life…and turned his wife and five children’s world inside out forever.

How? Well, negligence from the family Doctor and ignoring years of severe arthritis in the neck, meant that our daddy ji was apparently a ‘ticking time bomb;’ any small knock to the head would have had the same outcome: a spinal cord injury. What exactly is a Spinal Cord Injury (SCI)? According to the Spinal Injuries Association:

The spinal cord is an extension of the brain and is made up of a thick bundle of nerves. The nerves carry messages from our brain to the rest of our body. These messages help us to move our body, feel pressure and control vital functions like breathing, blood pressure, bladder and bowels. When the spinal cord is damaged, the communication between our brain and the rest of our body is disrupted, resulting in a loss of movement and sensation from below the level of injury. Damage to the spinal cord can be caused by a trauma like an accident, or as a result of infection or disease.

How will spinal cord injury affect my body?
The higher up you damage the spinal cord, the more movement and sensation will be lost.

*Damage to your spinal cord in your back will result in paraplegia. *Paraplegia affects the movement and sensation in your legs and possibly some stomach muscles.
*Damage to the spinal cord in your neck will result in tetraplegia. *Tetraplegia affects movement and sensation in all four limbs, as well as stomach and some chest muscles.

The family spent the next few months that followed the devastating accident in and out of the National Spinal Injuries Centre in Stoke Mandeville Hospital; we tried to make sense of what had just happened…why had our daddy ji’s body suddenly stopped functioning from the neck down…why did he have to breathe through a tube from a hole in his neck, why is he looking at us so helplessly for answers when we had none…

Words like ‘tetraplegic,’ ‘tracheostomy,’ ‘C2  Injury’ were thrown at us – Google search became a go to for the entire family, searching for information to try and piece together some answers to the alien situation we found ourselves in…

Months turned into a year at Stoke Mandeville so our maa and the second eldest daughter rented a flat nearby as it was too far to travel from the family home in Southall. Maa was with our daddy ji from early hours of the morning to late in the evening every day, without fail and with no complaints. The nurses kindly pleaded with her to go home and rest, ‘have a day off’…they eventually gave up trying, nothing would make our maa change her mind,

After 18 months of physio and care at Stoke Mandeville, we saw no improvement in our daddy ji’s condition…we were still hopeful at this stage that he would be able to move his arms or walk… “soon, it will be soon”.

The hospital eventually discharged him after the lead consultant, and now good friend stated that there was nothing else they could do to help his injury and perhaps taking him ‘back home’ maybe the best cure. So my maa and sister relocated to a ‘halfway house’ whilst the new family home was adjusted to allow for wheelchair access. The old family house sold, the old life replaced by a new one full of uncertainty…

There were so many days where everything seemed hopeless and the dispair in our daddy ji’s eyes took our breath away…

But there were also days of happiness, joy, strength and sheer determination to make things better for him. Trips to restaurants that served his favourite foods, family gatherings where we lavished him and each other with love and affection, hugs and words of hope and encouragement exchanged, “we got this.” And the day we finally moved into the new house in November 2016, adapted to Daddy jis needs. Perhaps these are the days that we will remember the most…

In December 2017  daddy ji decided he wanted to do some exercise, to be exact, ‘have a go on a bicycle’ – an activity he enjoyed at Stoke Mandeville in the early days.

He used a specialised bike to exercise his limbs that kept his blood sugar levels to a manageable level. He asked his youngest daughter, due to her connections at work, to enquire about how he might be able to get access to one…well the joy of him asking was enough… “he wants to get better and he’s trying to do something other than lying in bed and watching TV, it means he hasn’t given up hope, yay!”

So the youngest daughter embarked on a fundraising journey in 2018 and pledged to run at an organised event every month for a year. The rest of the family pledged their own fundraising ideas; I guess we all felt like we were doing something to help, collectively.

In 2018 daddy ji’s condition took a turn for the worse…there were a lot of dark days during this year. We nearly lost him a few times…but he came back to us, albeit with repercussions to his health…he had to be fed by a tube, a massive blow to him as he loved his food so much, a colostomy bag had to be fitted, loss of memory and dementia also kicked in which was heartbreaking, particularly for maa as she was losing her husband slowly and painfully.

January 2019 started on a more positive note, we saw the completion of the pledged fundraising and the target for daddy ji’s specialised trike was met, thanks to the generosity and support from family and friends. We talked about ordering the Thera Trainer exercise bike but daddy ji’s carers advised against it, due to his deteriorating health…. “wait for a few months until his health improves and his bedsores get a little better’…

At the beginning of July 2019, daddy ji was admitted to hospital due to another infection  – we know now that his vital organs had been deteriorating rapidly over the last few months. Maa stayed by his bedside from morning until night and on the 10th July at 11.10 am

after six and a half years of fighting, daddy ji let go…he left us…we barely managed to utter a few prayers wishing that his departure from this life would be peaceful. The sense of loss we all felt whilst clutching to his feet, his hands, his arms, his sweet peaceful face is indescribable…

Six months later we’re still asking ourselves ‘did the past seven years actually happen’…’has daddy ji actually gone’….physically we’ve all been on a sort of crusade if you like, to honour his memory the best way we can…a trip to Pakistan going to all the places he wanted to take us, feeding his entire village at a wake we organised, donating to causes that resonate with us, trying to do things for ourselves that helps to ease the pain…but it’s hard.

We’re still learning how to live without him.

One way in which our family decided to honour the memory of our daddy ji is to take the funds raised for his bike, thanks to the generosity of everyone who donated, and put it towards the community he became a part of. Five Dragon trikes were purchased from Tomcat SNI Ltd; a single speed trike for independent teenagers and adults and suitable for multi-user environments. An additional Dragon Trike was donated by Tomcat to the Ahmed family

The Six trikes will be donated to various organisations chosen by our maa, whose users will hopefully experience the joys, thrill and health benefits of cycling.

This is our daddy ji’s story and hopefully, it will continue through the legacies he has left behind.

The Ahmed family.

For further information about Spinal cord injury visit: https://www.aspire.org.uk/