Ill

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What is the mark of a hero? Is it a soldier, running into battle, looking death in the face? Is it the athlete who breaks a world record ? Is it the activist who risks prison, torture or death to fight for justice? I have known many quiet heroes who fight their battles with dignity and bravery but none have been so resolute and brave as Michael.

A week ago he awoke around 6am as usual but became ill very rapidly, eventually being taken to the John Radcliffe Hospital. He was diagnosed with aspiration pneumonia and spent two days being stabilised before I was able to take him home again. Words like “comfortable” and “peaceful” were mooted as goals for him but Michael isn’t ready to give up. He still firmly believes that Plan A will happen.

But his miracle hasn’t happened yet and as today has worn on he has become sicker, despite our best efforts to make him better. The antibiotics don’t seem to be making any headway and his condition is continuing to deteriorate.

The NHS is so often criticised for not being good enough but they have been magnificent; from the District Nurses who have so patiently and caringly explained the different options, the GP who stayed at work late into the evening to make sure everything had been done that could be done, the ambulance staff who tried to prevent an acute admission, the nurses in the EAU who watched him through the night and made sure he got his medication on time as well as finding a bed for me, the staff on 6C who went above and beyond to make him comfortable and let me sleep by his bed and the HCA who hunted down extra pillows and ice cold water. They have all done as much as they can so now it’s down to us.

We’re looking death in the face and Michael has not flinched. He hasn’t cried or tried to shout, he hasn’t run from the fight but is meeting it head on. He is my  strength even when he is too weak to move his hands. Today someone sent the following verses to encourage us and to honour him I want to share them with you, because this is Michael:

Isaiah 61, 1 – 3

The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to proclaim  good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favour and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion, to bestow on them a crown of beauty
instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendour.

So if you pray, please pray for a miracle. If you don’t, why not give it a go? You never know.

A tale of two taxis

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Michael and I wrote this last week, before he got ill.

 

A Tale of Two Taxis

Michael had an appointment at the John Radcliffe for Botox injections to reduce his saliva. Take a taxi, I thought, because it will be really straightforward and stress-free. I rang the company in the morning, explaining that we needed a taxi that would accommodate a tilt-in-space chair. “Of course, I’ll make sure you get one that will fit the chair in, no problem.” And could I pay in the taxi? “Yes, all of our taxis have card payment on board.” And please make sure it’s on time as we’ve not done this before and we don’t want to be rushed. “Made a note of it, no need to worry”.

It would perhaps be unfair to name the company, but suffice to say they made a right royal mess of it. The taxi was late, the driver flustered and bordering on rude as he told us we couldn’t mess around because he had special needs kids to pick up for the school run, and they got upset if he was late. He grabbed the chair and took a run up before getting stuck at the top of the ramp and yanking out the head rest. “You don’t need this, do you?” Well yes, actually, but if we delay any more we’ll miss the appointment. “Get in miss, we have to leave now or we’ll be late. Have you got £35? If not I’ll have to stop at the cash point so you can get the money out”. So you don’t have a card reader in the cab then. Neither did he have the facility to secure the wheelchair to the taxi so, as he took the bumpiest possible route to the John Radcliffe in order to avoid traffic I perched on the edge of my seat, one foot wedging the wheels of the chair as it skidded across the floor and both hand supporting Michael’s head as he was thrown around.

The driver asked me to key his number into my phone so we could just call him direct next time (never going to happen) so I pretended to press the required buttons while praying that the traffic jam would budge an inch and we could get into the drop-off area before Michael missed his appointment all together. I felt sick, flustered, and guilty for putting Michael through this awful journey because I thought it would be easier than driving, waiting an hour for a space to park in then trying to walk him with his ventilator, suction and feed pump. How would we get home, because we weren’t asking Mr. Helpful to drive us home again?

So I asked the Help Desk at the John Radcliffe for help. They knew exactly who I needed and gave them a call. 25 minutes later an energetic man with a massive smile bounded into the West Wing and said, “You must be Michael! I’m going to get you home. Please excuse the trestle tables; I was on my way to drop them off at the church hall when I got the call. Can I put the air conditioning on? “ Kit Mobility, a wonderfully professional and friendly company who actually CAN fit a big wheelchair in the back of the taxi without taking it apart and have the equipment to strap it to the vehicle.

Being in a wheelchair makes you so very vulnerable, and caring for someone who is in one can be a frightening responsibility. People who operate them have a duty of care to those they transport and this has been a real eye-opener for us. Still, now we know who to call and Michael got his Botox, so for his next treatment we’ll be fine.