In the last month, I’ve had an infection around the peg site, a cold sore and have had two bouts of vomiting. This, plus everything else in the last three and a half years has caught up on me. I am only kept going by wanting to be with Jane, Valentina and Sebastian. I feel weak and can’t see much joy versus the discomfort I’ve been in.


I was vomiting last week and someone pushed my head forward to avoid aspiration. I was trying to get them to move my head back so I could breathe. I was also looking at the fan which I needed on the highest speed to force in air. The nurse was using the suction machine, but it was broken. She cleaned out the vomit with the swabsticks. Very scary, and we learnt a lot. I hate being sick, because I can’t spit. Recovery for a few days and all the breakfast and medications come up. This time, I’m on my side. Got out of bed this morning, after a night of bringing up phlegm. The cough is rough and it takes a lot to move the phlegm. When it comes out, I don’t know whether I’ll swallow it or bring it into my mouth. There are usually a few seconds where it blocks everything. The nurses scrape out the sticky phlegm with a stick.

The staff are really trying. It’s the first time I’ve been in bed for many of the day staff, so they are learning about my needs.

I’m watching staff work under pressure and see different responses. Same for friends. I have limited lateral neck movement, so one of the sides of my head often lies twisted on the pillow. The best staff don’t ask me if I am comfortable, but go ahead and fix the pillows so I will be. Some staff ask me if everything is OK. Surely you can see my head is uncomfortable!? They then ask me questions to see how I would like my pillow. It’s impossible to know. I would like them to get me right with just one question at the end.

I was too exhausted to use the eye gaze in bed, so we used the alphabet chart, usually under pressure. Most staff and friends are good. Some people read every letter from, some don’t go back to row one but carry on and never go back to row one and some don’t write down the letters and forget. A friend was going through the night questions, but missed question four, but didn’t know it and I can’t tell her. Silence. Then a nurse reads the questions and I blink at four. Don’t get me wrong, everyone is doing their best.

I cough alot when I move my head, so from today…..


I am tired, exhausted. Can I get up from the metaphorical canvas? Phil sent the story of how God told Joshua to keep the faith after losing Moses and forty years in the desert. Caroline told me God knows my heart. Jane stays all day. Friends come from York days, Tom and Shirley for fun with the royal wedding, Si to cheer us up and Tim’s visit was cancelled due to British Rail.

Ecclesiastes 3:1-13 New International Version (NIV)
A Time for Everything
There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet[a] no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live. 13 That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God.

Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

7 thoughts on “Joshua”

  1. Dear Andrew. How a seemingly simple thing as organising a pillow brings up so much for everyone. As you say…everyone is doing there best but I see how it can be painfully difficult being dependent on others for almost everything.
    I am really sorry you have to go through all this. Sending you loving thoughts. Akash

  2. My dearest Andrew. My heart weeps with yours. If this is true of me, a broken, selfish, often ridiculous man, how much more must our Lord who loved you from the foundations of time also be weeping with you as he sees and knows your struggles. “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalm 56:8 Your tears are precious and will be replaced with rejoicing. Cling to Him who is the lover of your soul. I love you my brother. Jay

  3. Andrew,your honesty in the these words is an astounding testimony to your spirit and your will to overcome.Renewing the passport in spite of all difficulties is good as well.
    All our love to you and family.
    Gill/John and the French contingent.

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