Tag: care

Daring to Give

Daring to Give

“But I can’t do that thing,” said the lady as she waved her arms around. She meant sign language. I had asked her if I could sit beside her in a church service, and share her books for the songs and readings. This would help me follow and, in the case of the songs, leave my hands free to sign them.

It is a privilege to guest blog for this site. I was asked to pick out a key way the church has played a part in my journey, and the above story sprang immediately to mind. Because it’s a story of someone doing what she could, despite at first being concerned about what she couldn’t.

Since I was diagnosed with NF2*, and subsequently lost the ability to do various things, including hear, people doing what they can for me have been vital to my journey. People who pray for me. People who speak clearly for me to lipread them. People who carry my cup of tea for me (I have bad balance). People who welcome me. People who are patient. And much, much more.

On a family holiday in the Lake District last August, we decided to climb up to a waterfall. On balance (pardon the pun), it would have been sensible for me to stay behind. But my seven-year-old niece came to me and took my hand; “I’ll help you walk.” And she did. For as far as she was able, and then her mummy took over. My niece couldn’t physically help me over the really difficult parts, but that didn’t mean she couldn’t help. She went in front and told me when there were rocks to avoid tripping on. She did what she could. The lady at church, and my niece, looked beyond what they couldn’t do to what they could. Acknowledging the ‘can’t’, and embracing the ‘can’.

After the service – during which I did share the lady’s books – I thanked her for helping me. She took my hand and, putting ’genuine’ into the word genuine, she said, “It was my pleasure.” It was my pleasure. She really meant it, I could tell. Helping me – yes, me – had given her pleasure. She hadn’t found me a nuisance, or an embarrassment, or an inconvenience.

Often, I can be apologetic, thinking I’m making life difficult for people, hesitant to ask for help. But, if I hadn’t asked, that lady would have missed out on saying ‘it’s my pleasure’ and meaning it. If I hadn’t accepted my niece’s help, if I’d pushed her away, then yes, I’d have missed out on the waterfall. But more than that, I’d have rejected her gift to me. And potentially discouraged her from offering to give to me, or others, in future.

  • Remember that our Lord Jesus said, “More blessings come from giving than from receiving.” Acts 20:35b

By daring to allow ourselves to be vulnerable, to ask for help, to admit our weaknesses, we offer people opportunity for blessing. Opportunity to give to us, and so receive what is better. And, in a glorious paradox, as we offer that opportunity, we, too, are giving. We, too, are blessed. We, too, do what is better. And we become more and more caught up in the body of Christ, of which each one of us is a part (cf 1 Corinthians 12). Growing together.

  • In Him (Christ Jesus) the whole building is joined together and rises to become a holy temple in the Lord. And in him you too are being built together to become a dwelling in which God lives by his Spirit.. Ephesians 2:21, 22

How good are we at allowing others to give?

Emily sometimes describes herself as a professional patient. She has spent a fair bit of her life in hospital and knows more medical jargon than she ever wished to. Thankfully for her, this is offset by an amazing medical team.
Emily is an author and speaker. Most of her books have been written, at least in part, from a hospital/recuperation bed and, she hopes, are more accessible than above mentioned jargon. For more information, please see the links below.

Emily’s books: https://www.amazon.co.uk/Emily-Owen/e/B01EWPKC9W?ref=sr_ntt_srch_lnk_1&qid=1569511001&sr=8-1
*More about NF2: https://nervetumours.org.uk/what-are-nerve-tumours/what-is-nf2
Emily’s website: http://www.emily-owen.co.uk/

The silent killer – loneliness

The silent killer – loneliness

When I was in my teens, I heard stories about the older generations who find themselves at home, alone, for the majority, if not all of the week, without ever seeing or speaking to anyone else. More recently, I read a statistic which stated that more teens and young adults have identified as ‘lonely’ than the older generations. Then, 5 years ago, I became part of another loneliness statistic – the chronically ill. As it is for many people, I wasn’t aware about this missing group of people for exactly that reason. Chronically ill people are mising from society. We are in too much pain or too tired or too symptomatic to be able to mix with society for too long, if at all, each week, and this makes for a lonely existence.

I am very thankful that when I became ill, my closest friends stayed with me and checked in on me and continue to do so, but when I am having a particularly bad week due to higher pain or fatigue levels than usual, I have been known to not leave my bed or house for days at a time. I am blessed to have my family who live with and help me but without them, my days would be very quiet and empty and even more lonely than they are otherwise and this is the case for many chronically ill people.

This extract from Premier Christianity reveals the seriousness of loneliness:
Social psychologist John Cacioppo, at the University of Chicago is a world leader in the biomedical effects of loneliness. In January this year he presented some of his latest research at the Society for Personality and Social Psychology meeting in San Diego.  His findings confirmed a growing body of science showing that loneliness is more damaging than smoking 15 cigarettes a day, or being obese, or not taking exercise.  
(https://www.premierchristianity.com/Blog/Chronic-feelings-of-loneliness-can-be-deadly.-Here-s-how-the-Church-can-help)

Did you know loneliness could kill people? It isn’t just a feeling we have when we spend more time alone than we would like – it affects us physically too which, when you are lonely predominantly due to a chronic illness, means you can end up in a catch 22 circle of pain.

We are made to be together, spending time with friends and family and being part of a bigger unit. As Christians, the Church should be a part of that, but very rarely is that the case. 1 in 5 people identify as being disabled yet a much smaller than that number of church congregations have a disability. Why is this? Well, I think there are many reasons but one of the major ones is that more churches are focusing on the number of people in their churches and not on how they look after those people. Sometimes, people cannot attend a church service for weeks on end and feel sad and frustrated that they have to do so but when they finally get back to church to find no one has missed them, or if they never show up again and don’t receive a phone call, letter or check in by a member of the pastoral team, the loneliness they felt from being out of church for so long is exasperated and they may feel inclined to leave as they don’t feel wanted or cared about. This in turn causes them to stop going to church, decreasing their social activities and increasing the amount of time they spend alone annd ultimately, their loneliness too.

In the first three centuries, the early Church was one known for its love and compassion. Justin Martyr described Christian love as, ‘We who used to value the acquisition of wealth and possessions more than anything else now bring what we have into a common fund and share it with anyone who needs it. We used to hate and destroy one another and refused to associate with people of another race or country. Now, because of Christ, we live together with such people and pray for our enemies.’

Can we honestly say today that we are more interested in the people in the centre and on the outskirts of the church, and even the wider community, more than increasing the number of people who come into the church? Are we genuinely more passionate about spending our money to help those who need it than bringing in and saving as much as we can for our own benefit? Would we be willing to go out of our way, miss out on catching up with friends, skip a party or record our favourite TV show to visit or call someone who has been unwell or has not been at church for a while and help them in someway? Having a visitor could be enough, or perhaps they need a few bits of shopping? A small thing can go a long way and as we know, anything that reduces or stops loneliness completely is a potential life saver!

When a miracle doesn’t feel like a miracle

When a miracle doesn’t feel like a miracle

Just over 2 weeks ago I lay inside an MRI machine for almost an hour whilst the technicians moved the table back and forth with me on it to get images of my spine and surrounding tissue. 20 minutes in the pain hit me hard but I couldn’t move or I would risk damaging the quality of the images that were taken which might mean I had to lie still even longer whilst they re-took them. My eyes filled with tears but I got through it.

Today is day 3 of lying in bed trying to find that comfortable position that doesn’t seem to exist whilst at the same time, battling with nausea, fatigue, headaches, dizziness, the side effects of the tablets I have been taking in the hope that they will at least reduce the pain a little bit. I have already had my pain relief changed to a different tablet which can be taken alongside other pain relief I was taking for my regular daily pain, but the doctors won’t give me more until the MRI results are in and we know what is causing the pain.

I know that Googling symptoms is never a good idea but in my desperation to find answers and relief, I typed in ‘back pain’. A lot of the results that came up were not relatable as they talked about back pain caused by injury or short term pain. Mine has been progressively getting worse for 18 months after waking up one day in pain without seemingly any cause. As I kept scrolling I found an article from a hospital which stated that the use of MRI scans in diagnosing back pain is generally not recommended as very often it will show some ‘issues’ which many people have but that they are not aware of therefore, it is unlikely that these issues are the cause of the pain.

I was diagnosed with mild/moderate degenerative disk disease and schuermann’s disease a few years ago but the medical professionals didn’t feel that these issues were capable of the causing the pain I was experiencing then and I was told to simply ‘get on with it’. Now, the pain is 10x worse, I am terrified that when I get the letter with the results on through the post it will say ‘nothing to comment on’, i.e. no issues that would give a reason for the pain I have been having for the last year and a half.

I know of some people who would be giving God the glory for that because no issues on a scan means that there is nothing serious that needs to be addressed, no operations needed or drastic treatment methods. It would be the miracle everyone had been praying for. I don’t know if you have every experienced back pain (statistics would say that it is more likely that you have than haven’t), but when you have back pain that goes on for many, many months without much relief, it changes the way you move, live and feel emotionally and can even affect you spiritually. I most definitely have struggled with the mental and spiritual battles that come with long term pain and other symptoms associated with chronic illness and it is no easy feat. If the MRI comes back showing nothing that can/ needs to be addressed, I know I will struggle with the mental and spiritual aspects at an even greater level as just because the medical world can’t see my pain, it doesn’t mean it goes away. The pain stays there but I have to continue to fight for medication and care and support and even fight with God for some kind of answers in order for me to make peace with the situation and with Him.

In his book, ‘God on Mute’, Pete Greig told the story of a university peer who despite his young age, showed a great amount of faith. One day, he hurt his back and was obviously struggling with the pain but one day, he came over to Pete and told him that he had been healed, “it’s just the symptoms I can’t get rid of’, he said. I think we can all agree this is rather silly. If my MRI results come back showing nothing, it doesn’t mean I have been healed of whatever was the problem if my back is still keeping me awake at night.

When I spoke to my physio shortly after the MRI she was concerned by some of the symptoms I have been experiencing and said that she would keep an eye out for my results. That was the first time that anyone had believed my pain and had been concerned by what could be going on. Now, if I get a clear scan back, of course I will be happy that the possibilities that my physio had considered to be the cause of my pain are not the cause as non of them are very pleasant diagnosis, but at the same time, how can I move forward when I am so much pain all the time and no one believes me or is willing to treat it or dig deeper into what the cause might be?!

I don’t often go forward for prayer at church simply because I have done so so many times before and yet I am still ill and therefore I figured that there must be a reason for it but in the depths of intense pain, I took myself forward for prayer on Sunday morning last week. As I stood up, I was hoping that they wouldn’t try to tell me I had been healed or tell me it was my fault if I wasn’t, or even worse still, if it made them feel bad when they weren’t able to make me better (I know that sounds ridiculous but that’s just the way I think). I was thankful that none of the above took place but that they instead told me to come back for prayer persistently. They didn’t even follow this up with “until you are healed” so maybe I will go back again and see if God has something to share with or do for me – a miracle like other Christians thought, but not necessarily a medical miracle.

To sum up this rather longer than intended blog post, yes, God can and does still do miracles but a blank scan or blood test doesn’t necessarily mean a miracle, particularly if the person is still in pain or symptomatic. Perhaps the issue is just not visible in that method of testing or the illness is too early on in its progression for it be picked up by scans etc. If you know someone who is going through testing for a diagnosis due to debilitating symptoms, please remember that not all ‘miracles’ are actually miracles at all, but rather the result of imperfect medical testing, and sometimes these ‘miracles’ can actually cause the person involved to struggle with their faith more. Miracles don’t do that. Real miracles are God’s way of caring for His children and helping us see Him in the world we live in. If the ‘miracle’ of a blank scan doesn’t do this, it isn’t a miracle and shouldn’t be treated like one. This person will need lots of care and support and prayers so if you can, offer to help them, whether that be attending appointments with them or simply sitting with them at home whilst they process the news. They might cry, they might get angry, they might want you there or they might not. Try to be for them whatever they need at that time. Friendship is the great act of God that can be done for them at that time.

(Note: I apologise for the length of this post and the babbling in it. I am struggling to think straight through the pain and medication blurriness.)

Facing shame and guilt due to chronic illness

Facing shame and guilt due to chronic illness

In her book, ‘Illness as Metaphor’, Susan Sontag explains that within many cultures, illness is believed to be the result of something a person has or hasn’t done. Perhaps you’re ill because you ate too much bacon, drank too much wine, did too little or too much exercise, didn’t get enough sleep, put yourself into too many stressful situations, dwelt on a situation too long or even sinned (did something wrong in God’s eyes) etc. etc. 

I know my health problems are not my fault, in fact we are pretty sure that it is likely the result of my genes, but sometimes I still wonder if I should have exercised more or eaten healthier or done more meditation even though I know this is unlikely to make any difference at all. When I think about what I could or should have done differently, I feel guilty as if I could have changed the past, I wouldn’t be suffering but nor would I be making life harder for those around me. 

My parents suffered when I couldn’t eat and was very weak and when I experience high levels of pain because there is nothing they can do to help me. They suffer financially because I cannot work enough hours to earn enough money to sustain myself so are looking after me at home too. There relationship may even suffer because I take up their time and energy so they have less left for each other. I am almost certain they would not want me to think like that but I feel guilty for what I have taken from my family and those around me who I care most about. 

Another avenue that produces shame and guilt is being vulnerable and honest. When I am vulnerable and honest with people, I will tell them when I am in too much pain to continue walking or too tired to stay up and socialise or that I need to have something different on the menu due to dietary requirements or I need to have extra cushions on my bed, a downstairs room in a hotel to reduce energy usage. In real life, it means saying no to baby-sitting because I am too tired or in too much pain to help out despite having done nothing else all day, leaving someone who has done 8 hours work, cleaned and tidied, walked the dogs and already baby-sat yesterday to do it again today. That leaves me feeling very guilty but there is nothing I can do. My body is out of my control. 

Shame is the result of societal norms being broken. If the shame came as a result of wearing bright pink clothes to work in an office where everyone else wears suits, the person may be embarrassed but they can wear a suit to work the next day and the shame will slowly disappear. When the shame happens as the result of something beyond our control, the only we can do is hide it the best we can. For me, that looks like not using the wheelchair when out in public, eating foods that my friends eat even if they hurt so as to not appear ‘fussy’ and provoke questions and doing all I can to keep up with those around me and then going up to my room to sleep and take medications or cry until the pain subsides or I fall asleep. 

As a Christian, I fear shame every time I open up to someone new about my health issues because society says illness is our fault (see above) and many Christians often say that if you are not ‘healed’ it is because you don’t have enough faith/ don’t pray enough. When I have done all I can and prayed everyday for many years, had prayer evenings dedicated to my healing, this not only leaves me feeling upset and frustrated but shamed because I can’t do anything to change those people’s views of me and my condition. 

However, we know that God does not want us to experience guilt and shame. They are not heavenly emotions and do not belong in God’s people. Often, guilt and shame are our own fault in which case, the bible tells us we need to ask for forgiveness but this is different because chronic illness and disability are not our own fault (generally). Even the disciples, who were only out to do good by sharing the good news of Jesus with those around them, experienced shame but instead of letting it overwhelm them, they turned it on it’s head -“rejoicing that they were counted worthy to suffer shame for His name” (Acts 5:41). It might not seem like it, but we can use the shame we feel for having disabilities or chronic illnesses and use them for good by using them for His name and glory and for the extending of His Kingdom.

It is likely this will not keep the guilt and shame away completely but we can ask God to protect us and block the unfair attacks that are aimed at us. When we pray, He listens, and He will work in our guilt and shame and stop the devil/ accuser from hurting us through his lies. Overall, we must remember that even when we feel guilty because others are making us feel that way, God is not saying that to us. He loves us and cares for us and has not given up on you.