Update From Behind The Shield

Seperator

It’s been a while since my last post: my apologies. 

The last few months have been difficult for all of us. Tens of thousands have died and many more have been kept alive only by the brilliance of the doctors, nurses and staff of the NHS. Countless others, who have not been directly affected by the Coronavirus, have lost jobs, careers or even businesses. Children have had their education severely disrupted and whole year groups have missed exams, proms, and the chance to say goodbye to friends and celebrate the end of one of the most formative stages of life. Most who have suffered bereavement have been denied the ritualistic comfort of the gathering together of friends and family for a funeral. The loneliness of isolation and the stresses of all the above have precipitated a looming mental health crisis that will need addressing with compassion and above all resources. Yes, it has been a difficult time. And all indicators are that it is not over yet. 

For my part, I have been shielding since early March. The government gave clear instructions to those of us deemed vulnerable enough to be in this category; basically, stay indoors and avoid all human contact. Unfortunately, the official advice didn’t properly take into account the reality of people in my situation. I have a team of eight carers providing 256 hours of care per week, with Polly stepping in to cover days-off and weekend ‘drop-in’ shifts, as well as support for the carer on duty at night. Each of the eight carers has families, flatmates, friends of their own. Some of the carers travel by public transport to reach me. I am reliant on each carer and their families, flatmates, friends etc adhering to lockdown protocols and social distancing. So far, so good. But, as lockdown eases and a second wave of the virus seems inevitable come the autumn and winter, I remain wary and, it must be said, slightly anxious. 

There is anecdotal evidence that stress has a deleterious effect on conditions such as Muscular Dystrophy. This has certainly been my experience. In March I lost my remaining speech and my ability to swallow. My right arm has weakened, which has made controlling the wheelchair problematic. My hearing has also deteriorated. In addition, I’ve damaged my left eye, which has made staring at a computer monitor painful, hence my absence from social media and this blog. I can’t pretend it hasn’t been a bit grim. 

However, where there is a will there is a way. Adjustments to the cushion on the wheelchair and a slight repositioning of the controller have mitigated some of problems I’ve been having with the chair. I have my Stephen Hawking-esque speech synthesiser to facilitate communication. Polly found me a clever ‘one-way’ straw that enables me to take the occasional sip of espresso. I can also, carefully, suck certain types of sweets. (I do crave the taste of something savoury though.) My hearing remains a problem, at least until I can consult with an audiologist, although I have bought a DAC (Digital Analogue Converter) which greatly enhances the sound when I am wearing earphones. My eye has improved considerably, despite a failed Botox injection into the eyelid which was meant to close the eye but didn’t. I’m using saline-soaked cotton-wool pads as compresses through the night, which seems to be slowly doing the trick. And, on the plus side, a recent blood-gas analysis indicates that my lungs are functioning better than they have been since the unfortunate events of 2018. 

For anyone who is interested, Polly and I are featured in The Guardian’s ‘How We Met’ column this week. The article is 90% accurate. Thanks to Lizzie Cernik for distilling my original blog post and an hour-long Zoom interview into 700 words. The article is titled

How we met: ‘It’s 1,300 miles to Romania – the same as the number of pounds my phone bill was’

That’s it for now. I hope to recommence with this blog on a regular basis forthwith. Thank you for reading. Keep safe. 

14 Comments

  1. Pauline Seaman on 14/07/2020 at 2:43 pm

    Lovely to hear from you Stephen! Happy birthday for yesterday 🎂 I hope you stayed sober..no I don’t!! 😊 Only yesterday I was looking through the Burning Issue which I performed for two years with the Celebration Choir.I did it as Hyacynth Bucket..I hope you don’t mind..it always went down well!!
    Thanks for sharing your difficulties at the moment,it will be a privilege to pray about them.
    Take care, stay safe and God bless xx 🙏🙏

  2. Toby on 14/07/2020 at 2:46 pm

    Waiting with bated breath to read about how you met Stephen. I know none of that but I remember the Romania bits of course . Plenty of coffee and talking . Obviously I was married so our phone bill was carefully managed by John , a Yorkshire man. Did you have to go through an operator? It seemed best to try late at night and sometimes I went to sleep whilst “holding”. We are ancient now , John 85 and I 81 so we have been locked down and are trying not to be restricted to discussing our medication. We watched Bill Bryson’s film “A walk-in the Woods” and are wondering now if there is something interesting we could manage to do now . No decisions until Nicola has spoken again!
    Good to hear from you , love to Polly. Toby

  3. Sarah Lennard-Brown on 14/07/2020 at 2:53 pm

    Lovely to hear from you Stephen – we have been wondering how you were getting on. Will look for you in the Guardian. Lots of love you you and Polly.

  4. Mark Budden on 14/07/2020 at 2:58 pm

    It’s so generous of you to share this, Stephen, thank you. You describe and explain the ramifications of shielding brilliantly. I can fully understand your anxiety about the lifting of the lockdown and the worries about the second wave. Keep well, and thank you again, Love to you all, Mark

  5. Karen Martin on 14/07/2020 at 3:07 pm

    Lovely to read your posts Steve! I remember those times very fondly xx

  6. Debbie Field on 14/07/2020 at 3:26 pm

    Polly got in before me with the one way straw!
    Great article..
    Keep safe
    Debs

  7. Donna on 14/07/2020 at 4:20 pm

    Great to hear from you. You have been in my prayers. I’m also shielded and it’s been tedious.

  8. Wendy Forman on 14/07/2020 at 4:25 pm

    Good to hear from you. Praying for you and the family 🙏

  9. Alicia on 14/07/2020 at 6:11 pm

    Great to hear you’re doing ok ,Belated birthday Wishes 🥳 .Love to all x

  10. Rob Tunnicliff on 14/07/2020 at 7:06 pm

    Great to read how you are all doing, how you do it continually amazes me. Stay safe love to you all Rob Tunnicliff

  11. Amanda on 14/07/2020 at 11:03 pm

    Nice to have you back
    Love to you both ❤️

  12. Debbie Straw on 15/07/2020 at 10:18 pm

    Always such a blessing to hear from you via this blog. Keep up the good work. Looking forward to the next post. Our love to you and all the family.

  13. Stephen Deal on 09/09/2020 at 3:19 pm

    Testing testing testing

  14. Jules on 09/09/2020 at 9:08 pm

    This is a legitimate non spam comment designed to test the anti spam filter. 👌

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