I am sitting in my car waiting for my partner to finish the weekly shop, wondering how I can start this blog post. 2020 has been a hard year for so many people because of the uncertainty of the Pandemic. It has killed many innocent people, brought financial hardship to service workers, split communities and caused many who have chronic illnesses to be fearful of getting treatment. So much upheaval everywhere, it makes it difficult to know how to prepare or plan for 2021.
Usually when I write this annual post, I reflect on the year which has passed, and how I am preparing for the next. This year I will write two posts, as there is a lot to write about.
Over the year there have been a few things which have happened, which I feel are very good.
At the start of the Pandemic, it was confusion. Lockdowns, curfews and lost jobs and services. We stripped the shelves in the shops of toilet paper and pasta. It was grim. But people soon realised there was going to be a new normal for everyone. This realisation then started people on a new track. How can we adapt to this strange and unfamiliar experience? Our generational memory didn’t stretch back the hundred years to the previous pandemic.
This new understanding brought people together while remaining apart. It was soon understood the vulnerable in our communities now were at an even greater risk, which now included death. Here in Ireland, voluntary food and medicine delivery systems started up. Although sheltering, neighbours checked up on each other, and helped, if they could. This was fantastic to see.
As I am one of the vulnerable, it was heartening to see how much effort people put into ensuring our safety. Masks, gloves and sanitising stations became common, as people tried to ensure they were not responsible for the spread of this virus.
I also noticed how many shared their experiences of how to manage life with this storm whirling around us. Physiotherapists provided therapy online, doctors too started to do a triage on the phone, so only the necessary went to their office. Prescriptions are e-mailed, and it is quicker to collect the medication. Once each health service area found a way of working while still protecting the patient, they started back again.
During this pandemic I was in hospital, had an x-ray, got new equipment to help my walk, and I had a mobility scooter assessment. Although things were delayed, and I probably have lost some function which I will never recover, things restarted. Now, as the third wave is upon us, these medical services will not contract like they did in March. We adapted.
When the world went online for meeting it opened up so such more for me. Because of my various symptoms, travel comes with many challenges. My walking is very poor and I need various aids to keep me moving, and even all these sometimes make no difference, and so I must sit or use a mobility scooter. My bladder can be a drama queen too, being urgent sometimes, and then getting stage fright. It has become difficult to make an hour’s drive without a pit stop (even with my new bladder meds).
All that, plus the energy I must use to get somewhere, combine to make travel hard, and this then acts as a deterrent. Once the world accepted a conference, seminar or work meeting could go online, the world opened. I attended meetings in the USA, UK, Ireland and Spain. The Spanish meeting was with EUPATI who are training me to be a Patient Expert. The meetings still have a physical cost, mainly pain, but its impact on my life is much less.
I even went to the stage of putting together my webinar on “How to Manage Anxiety, Stress & Depression during the Pandemic” which went very well. The audio is on my podcast and I also broadcast it on the local radio station (www.connemarafm.ie). Based on the success of that project, I am now working on another webinar series for people with Progressive MS. These programmes are now available to so many people who would not have been able to attend such a meeting.
In my work in NUIG as an Assistant Researcher on a new therapy to help people with MS who have cognitive problems, we also had to adapt. The therapy was originally given to people face to face, and we had to change it to an online therapy. Now many more people have access, and it was with the help of the MS Society that we could adapt the delivery method to online.
Patient & Public Involvement (PPI)
This online meeting system has also aided PPI. Researchers need to talk with patients, and it is difficult for people with chronic illnesses to commit to anything. Whether it is social, work or voluntary. Arranging travel is always difficult. It has stopped me from being involved in PPI activities as the stress of travel proved a block.
Now, with everything online, I am involved in so much more. It has now reached the stage where I cannot commit to anymore. I have reached my limit. This restriction is because of the confines insisted by my illnesses. It actually is a source of happiness for me, as I am now working to my fullest capacity. This gives me vitality.
Even the training to be a better advocate has all gone online. IPPOSI have launched their new programme and EUPATI has its own online programme. Both are fantastic, bringing more patients to a higher skill level. Making their voices stronger and louder.
Earlier in the year I attend an IdeaFest with Roche, all online, and now they are developing a new app, based on the ideas generated at that meeting. There were several patient voices at the meeting, and now it has moved to the next stage, it still involves patients. Fantastic news for PPI.
This has to be the worst part of 2020. This virus has killed so many people around the world, and from what I am reading (https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html) the long-term affects of the virus could be significant. Fatigue is one symptom, and this is something people with MS are familiar. Cog fog and depression are others which are common for people with MS.
There is also the economic impact of the virus on service workers. People who work in hotels, restaurants, bars and hairdressers have been impacted much more than the rest of society. It will take years to recover and I wonder how all these people will adapt. My fear is being unemployed, or underemployed, for a long time could have devastating effects on their mental health and thus employability.
This is going to be a massive challenge for governments to overcome. The drag on society could be enormous, but with some creative thinking, we could overcome this. It will need more people to work together. If nations allow their people to help design novel ways of work, then I think we will fare well. However, if the political class ignores this, it could create division in society. Our society is already divided enough, without the economic divisions enlarging.
The government in Ireland is already looking at the idea of a basic income for artists. (https://www.businesspost.ie/ireland/ministers-to-consider-basic-weekly-payment-for-artists-a8e588df) It is not a huge stretch to apply this to everyone who works in the service industry. Already this is the lowest paid sector of work, yet as we now understand, it is a very important part of our society.
Climate change is still a reality, with the polar ice caps melting, and more storms and wildfires. This year seemed to come with more devastation. The impact humans have had on this earth has had an enormous impact on the diversity of plant and wildlife. We are doing this damage ourselves and it is the unfettered need for more energy which is destroying the planet.
I try to reduce my impact. Less packaging, more considerate use of water, and also using less energy. However, being disabled makes it harder to reduce waste. There are many things I need to use more of than the ‘normal’ person. For example, I have to use the car more often for brief trips. Because I cannot walk well, I need to drive to all the local shops, which if I could walk, I would walk to these places. Therefor using less energy and keeping myself fitter.
My fear is they will leave chronically ill and disabled people behind as we strive for a society which is kinder to nature. The new push towards electric vehicles is an example. The city charging points are far away from disabled driving bays, or shops, and it is more difficult to adapt an electric vehicle if you need to transport a scooter or chair. The batteries make it difficult to install ramps or cranes. So when I get my next vehicle it has to be diesel powered, the dirty option.
I have struggled with how to name this ugliness, which I have seen more of in the last year. My first point above highlighted the ‘Good’ of ‘Community Spirit’, but this contrasts with the rise of people only interested in themselves. In life it is important to safeguard yourself, so individualism has its merits. This year I have seen how people, particularly regarding the virus, refuse to wear a mask. They feel the virus isn’t a threat to them, and this may be true. However, it could be a threat to someone else, and the act of wearing a mask would protect the other person from getting the virus.
Masks have become a symbol of subjugation, and not of protection. There have been so many false claims spread during this pandemic, I realise it cannot be just a recent phenomenon. Perhaps these mistruths are being spread about many things. This inconsistency of information has led to distrust of governments, businesses and people. This has led to an understandable need to protect what is your own, and to avoid looking after the common good if it doesn’t directly involve you.
My fear is this will lead to a poor uptake of a vaccine, which will lead to an even more drawn out pandemic, with many more casualties. We need to get back to thinking about community, and how our lives are better as a result. Helping people to trust science, governments, and people. We need to work and live together harmoniously. I know this will always be an aspiration, but we need to keep this to the front of our thoughts.
Find commonality, not difference.
I think the Good is greater than the Bad & Ugly combined. As I was writing this, and thinking about the three different areas, I realise the Bad has been a catalyst for the Good. If we are aware of the Ugly, we can take positive action to prevent it becoming worse. Everyone of us has a part to play in making the world a better place.
In my next post, I’ll be writing about what my aspirations are for 2021.
Happy New Year Everyone!!