#OT24x Presentation

Here’s a copy of the presentation I did as part of the 24 hour Virtual Exchange for OTs, based on this blog.

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Faith and healing, in which I discuss faith-healing, prayer and Christianity

I recently read this thoughtful blog posts by @latentexistence, in which he documents his on-going faith story, and the challenges he has encountered due to his illness and the efforts of his faith community to heal him.

Firstly, let me say: it is an incredibly brave thing to document stuff about faith in your blog, and I’m really impressed by @latentexistence. Inspired by his example, I’m going to address some similar issues around my own faith.

I was raised as a Christian. We went to church on a weekly basis. During my school years, I went to church and proudly sung in the choir. After school, my faith lapsed. As many young adults do, (and I think it’s a good thing, too) I searched for my own meanings. I explored other faiths. I attended meetings of a wide range of religious groups- from Hare Krishna to Quaker, and I read religious texts and attempted through Gnosis to look for answers to the questions that inspire many in their spiritual search. Who am I? Why are we here? What is the purpose of my life?

I believe that many faiths are able to bring comfort, and help people to find answers to these questions. And I know that a spiritual community can offer support and love to many people. I missed the quiet meditation of prayer and worship, although I still did meditation and relaxation exercises, which I think appeal to the same need we have as humans to have processing time to reflect and recharge.

After the birth of my first child, I started to attend church again. It was largely thanks to my partner’s family, who went weekly to church. When we visited, we went too. We discussed the sense of community at his parent’s church, and agreed to look for a similar community of our own. Our local Anglican church turned out to be friendly, and we started to attend regularly. We soon felt part of the community, and it was fantastic to feel like part of something greater than our own small family. We loved helping out at events, and I loved trying to look in on the elders from the church when I had the chance. In turn, when I became disabled, I was grateful and thankful to receive fantastic support from the community in turn.

But one thing that did bother me, was that some members of the church seemed to be very concerned with “healing” me. When they visited, they often prayed for my healing. Now, I think prayer can be a huge comfort for people. It certainly brings me comfort to pray. I like to get to a point in meditation or prayer where the rest of the world slips away, and I’m content to sit, with my breath, for that brief glimpse of completeness before the world comes back into view and life carries on. But I don’t believe that prayer is an effective way to “get” something, whether that something is spiritual (greater closeness to God), or more mundane, like a new car or physical healing.

I believe that we are all here to pursue our own journey of faith (even atheism is a faith). I do not believe that we are here to impose our own ideas of faith on anyone else.

As a Christian, I believe  my faith means that my (frequently unsuccessful) efforts to live a Christ-like life make me happier than I would be otherwise. But happiness isn’t a straightforward positive mood- far from it. But faith can help me to paddle through the dark times and hope for more positive things to come. Faith can fail, too; there are times when my doubt wins out, and I lose my faith. But, so far, it comes back. But I don’t believe that God does some of the things that I sometimes feel other Christians believe:

  • God doesn’t treat Christians and non-christians differently.
  • Being a Christian doesn’t guarantee you an easier ride through life.
  • Prayer helps- but not always in the way we expect.

I believe that prayer really helped me to get through becoming disabled. It might sound strange to non-believers, but prayer really helped me.

How? If prayer was so helpful, then why weren’t you healed? Why do you still have so many problems?

The way I saw it was this. God didn’t heal my physical problems. Through prayer, I was entering a state which helped me to deal with everything I was going through. Rather than ask for a particular outcome, I prayed for God’s grace to adapt to my changing circumstances. I tried to trust that God knew better than I did about what should happen in my life course.

Actually, I really did feel “healed”. I found the strength to keep going, when it was really hard to do so. I was able to be a good Mum to my kids. I managed to keep my relationship. I didn’t flip out; I calmly went through the stages of becoming disabled without getting angry with life. I was able to laugh, still. I was able to feel joy, still. Okay, I would’ve laughed and been joyful a lot more if I hadn’t been dealing with pain and fatigue. But I would have laughed and felt joyful a lot less if I hadn’t prayed.

Some members of my church seemed to believe that by praying with me they would effect a physical healing. They believed that the Holy Spirit would somehow rearrange my bones, my joints, remove my pain, and this would happen in testament to their faith, or my faith (I was never quite sure which).

  • Now, what kind of God would take away my pain, but not the pain of another person who happened not to have faith? Not the God that I believe in.
  • What kind of God would leave me in pain until I asked in prayer to be brought out of pain? Not the kind of God I believe in.
  • What kind of God would use my agony- and relief from agony- to prove to me He exists? Not the kind of God I believe in.
  • If an all powerful God could take my pain away but chose not to, what would  that say about God’s love?
Faith-healing has been de-bunked by many. I think that Paul McKenna’s recent programme about how he could train someone to use the same tricks that many faith healers use to con their audience was very telling. I was going to post a link, but couldn’t find one on YouTube, I’m afraid.
Faith healing has it’s believers. But they are not a homogenous group with people of faith.
In fact, I wonder if faith healing is more akin with fundamentalism than mainstream religion.
Fundamentalism, of any religion, has at it’s core a belief that the “in-group” has special status, hence will be saved whereas the “out-group” (everyone else) will be excluded (from the afterlife). It isn’t a stretch to realise that fundamentalists can accept the idea that their pain could be relieved by prayer; and those of the non-believers would not.
I am happy to report that for many Christians, including me, this is an abhorrent idea. The overriding message of Christianity is one of love. God’s love for us means He will always help us to find a way through the pain- to give us strength when our strength fails, to provide hope when times are dark. And by that, I mean everybody- we are all equal in His eyes. Since we are all sinners, none of us are better than any others, whether we express faith or not. So how could having faith ever get us special treatment? It couldn’t. That’s what’s so radical about Christianity. It is God’s grace that saves us, nothing that we do, or fail to do, ourselves.
God doesn’t remove the pain that I’m, in any more than neglect to remove the pain of someone with no faith. But the act of prayer provides me with patience and grace to deal with the pain.
Faith has therefore played a part for me in dealing with disability and pain. As a therapist, I am rightly wary of discussing my faith with people I work with, and would never wish to assume that others would benefit from my experience of faith. But Occupational Therapists are perhaps unusual in that the spiritual dimension of people we work with is specifically indicated as an area of occupation we would wish to facilitate, and I wonder what my experience of faith and healing will mean for me, when I eventually return to practice.

Valentine’s Day- My DLA Story #ombh

People may have read my blog before and may therefore, be familiar with how I became disabled last March/April. So excuse me if this is an old story. To make a long story short, for the benefit of other readers, I developed a problem with the joints in my pelvis which caused excruciating pain. This led to a loss of mobility. I was advised to take weight off my pelvis and side lie as much as possible from the fourth month of pregnancy. Because walking even with crutches became impossible. I was issued with a wheelchair, which I have used since last Spring.

I couldn’t stand up for long enough to make myself food, I couldn’t bend to load or unload the washing machine. I couldn’t tolerate car travel, because going over road bumps jiggled my joints causing agony for days afterwards. I was put on painkillers, which didn’t quite stop me being in lots of pain. But did increase my fatigue, and cause a certain fogginess of cognition. Both work and most of the tasks associated with my parenting role became impossible.

Becoming disabled is a curious process. For me, it was mixed with denial, fear, self-stigma and shame. I hid myself away, in pain, like a wounded animal. I turned on my partner, who had been the person helping me turn over in bed, who had helped me get my pants on each day, who had got me every painkiller and glass of water. I didn’t want to be a burden; I didn’t want our relationship dynamic to change to carer and caree. I was snappy with my child, who was being kind and as understanding as a three year old can be to her pregnant and pained Mum. I didn’t bother phoning friends. If people came to see me, it was great, but it tired me out for so long after each visit that I didn’t seek it out.

I understood that I needed help. I didn’t feel guilty- I work in healthcare– I often help others and consider it evidence of civilization that, in turn, I will be looked after when I need it. A few attempts to get the Social Care I thought I was entitled to didn’t quite work out (I was incorrectly assessed by an unqualified member of staff) but I did get some bits of adaptive OT equipment which helped me enormously. Several of the professionals I worked with advised me that I should think about benefits. Proudly, I resisted this- after all, I didn’t need benefits- I was able to earn my own living.

But the day came when I realized that in order to get a blue badge so that I could park near enough to shops to be able to make it in there, I needed a gateway benefit to confirm my disabled status. I realized that the accessible transport I needed to go anywhere cost money that I didn’t have. My wheelchair (on loan only) needed a cushion, and there were little bits of equipment that were important but that weren’t issued by Social Care. I needed a pedicure every six weeks because I could no longer reach my feet and I was getting in-growing toenails. I couldn’t get many of my clothes on, so had to buy a load of new maternity clothes that would go over my head. I couldn’t bear the cold on my back, so I had the house at a constant balmy 21 degrees. I couldn’t stand to make food, so I had to buy ready meals rather than cook everything from scratch like I always used to. I then had to buy ready meals to feed my daughter, for the same reason. I started to notice what a lot of extra expenses my disability was costing.

So I was brave, I made the decision to apply for DLA. DLA is variously described in the media as an out-of-work benefit, or as a target for scroungers. Actually, fraud rates for this benefit run at 0.5%, and given the complexity and length and humiliating detail of the form it is no great surprise. It is available to disabled people to cover the additional costs involved directly due to disability- such as the ones I detailed above. The benefit is awarded whether or not a person is in work, and in fact many disabled people are only able to work because of the benefit which can help with accessible transport costs, extra equipment, or help in the home so that their energy is reserved for paid work. In order to qualify, you must be disabled for three months before filling out the form, and be predicted to be disabled for six months after the form is filled out.

When I went into the appointment to apply for the benefit, I wasn’t expecting it to be quite as humiliating in the detail I was required to give. Modesty prevents me from sharing with you here, but toileting detail and all the small humiliations that had been kept within my family were aired with a stranger. At this point, I was unable to sit in my wheelchair for more than an hour or so. During the appointment, the pain increased and I became visibly sweaty and uncomfortable. She recognized the extreme pain I was in, and wholeheartedly assured me that we would get this done as quickly as possible. She did help to get to the end of the form, although I was in a lot of pain and didn’t give as full answers to the questions as I could have done were I not suffering so much.

Form completed, it was sent off at the beginning of July. I have to admit, I felt confident- after all, I was genuinely in need. However, the next I heard was three months later (September), when I got the news that my application had been refused on the basis that the assessor thought I would probably not be disabled after six months from submission of the form (i.e. January 2011). I had assessments from my G.P., my Social Worker, the reports from my Home Care team members, all of which supported the assertion that I was likely to remain disabled for some time. But, I accepted the process sometimes produces unexpected decisions, and asked them to look again at the decision. A month after this (October), and they got back in touch to say they had looked at the decision and had decided that I did not meet the criteria because I would not be disabled six months after filling in the form. At this stage, four months after filling in the form, I requested to know what information might be helpful in order to ensure the correct decision was taken when I appealed against the decision they had made. They assured me the reason for the decision was that I would not be disabled on 1st January 2011. I gently disagreed with their analysis of the content of the supporting documentation, which I had copies of on file. I asked what my next step was.

Once the initial decision has been communicated, and the decision has been looked at, the next step is to take the decision to a tribunal. So, I filled in the tribunal request and submitted it, and settled back to find out when the decision would be made. They got in touch with a date for my tribunal hearing. The date was MAY 2011. I made several telephone calls and got the members of my treatment team to do the same, to find out if there was no way to get re-assessed sooner. No, a full 10 months after the original application was the very earliest they could expedite my Tribunal. Let me make this clear; the Tribunal are charged with assessing if my disability was likely to remain in place post January 2011. I had numerous professionals who can attest that this is, indeed, the case. They still will not even consider my decision for a further 5 months. During this time, I am expected to continue to fund my entire range of disability related expenses.

So despite the fact that I have extensive letters on file from all the professionals involved in my care, detailing the effects of my disability on my life, I have no DLA. I cannot walk unaided for more than a couple of steps, I use a wheelchair for every journey outdoors, I have a car (taxed, insured) but I am only able to go out in taxis; despite this, I am still not in receipt of mobility component of DLA. I am in constant pain and unable to dress myself; it’s unsafe for me to shower in the house alone in case of falls; my partner has to get out of bed and get my wheat bag when the pain is too much for me to sleep with; I have to have painkillers brought to me when I wake in screaming agony; I cannot make my children meals, I cannot bathe my baby. Despite all this, I still do not receive Care component DLA. Without DLA as a “gateway” benefit, the services that I require, the re-housing that I need, the help with parking, childcare, taxis etc. are all out of reach. the benefit exists to help plug this gap- the financial cost of disability that is hidden from the able-bodied world. And it is so, so hard to claim.

Which does explain why the level of fraud for this benefit is so extraordinarily low. Why efforts to reduce the number of people in receipt of this benefit are disingenuous at best, discriminatory and damaging at worst. Why all right-minded people should, and will, resist this Government’s attempt to further restrict the life chances of people, like you or me, who happen to be disabled.

Today is Valentine’s Day. Have a heart- listen to the voices of the Broken of Britain campaign, sign this petition, and write to your MP. Explain that any of us can become disabled, that DLA is a disability benefit unrelated to work, and that it is desperately needed by those who are in receipt of it. We’re all in this together, after all.

A Little Knowledge is a Dangerous Thing- in which I discuss Medical Student Syndrome

Dear Reader,

I am generally attempting to take the recent turn of events which resulted in my using a wheelchair with good humour. However, there are circumstances in which it is difficult to be cheerful and polite to people. What follows is an example of one such circumstance, and I hope it is of value to you when you next counsel a friend or, if you are in the helping professions, offer advice.

It relates to something which I will call “Medical Student Syndrome”; I am sure this is not a syndrome which affects medical students alone, but I am sure medical educators would give a number of examples illustrating the point I’m making!

I have a dear friend who also happens to be a medical student. I think she is amazing. She is a Mum, and does a great job with her lovely kids. She works really hard and has completed her education whilst having her kids. She is a kind person, who really feels called to helping others, and is literally putting her money where her mouth is by going back to college as a mature student to study medicine.

She called round to see me the other day. As is sometimes the way, she seemed more appalled by what has happened to me than I am. She behaved as if what has happened to me is tragic, and i hate the ‘tragic-crip’ narrative almost as much as the ‘super-crip’. Sometimes it’s hard for people to understand that although this is kind of new and shocking for them, I’ve been living this for nearly a year. I haven’t exactly made peace with it, but I don’t find my situation tragic. I have a lovely family, I have lots of support, I don’t feel ill so much as injured- I’m in pain but I don’t have flu. I try to be mindful in my daily life and squeeze joy out of the brief periods of activity and the time I get with my kids. Viewing my life as a tragedy disempowers me- assumes I’m not as capable as before. I may be tired, in pain, and not leaping around, but I’m still capable of everything that’s important and I wouldn’t give up my family for the world.

She looked appalled as I told her the result of my recent assessment. But the part which shocked me was when she said

“…but that’s wrong! I’ve just had a lecture in Physiotherapy and Occupational Therapy- and they were very clear that ‘if you don’t use it, you lose it’! you must get out and about!”

Now, where do I start.

  1. Attending a lecture on something does not make you an expert. It is hard for some very academic and bright people to understand that all their learning may not be sufficient to make a fully balanced and nuanced assessment of a case. That comes with years of learning, academically, or on the job, or with lived experience. It is easy, as a student, to see your latest studied condition everywhere- it is like internet self-diagnosis is for the general population.
  2. Other professions hold skills that are not taught as part of the Medical training. Some people believe that Doctors approach Gods with their learning, understanding and compassion. Some of these people will be your patients, and they will be sorely disappointed with you when they discover you are all too human. Some of these people become Doctors, and I dread to think what happens when they do, but I think that misunderstanding the benefits of the multi-disciplinary approach may be the least of them. When working as part of a treatment team, it may be the unqualified member of staff that the patient has opened up to… It may be the ward domestic that holds the key to understanding this individual. Shock horror, it may be the patient themselves who can inform you of their condition better than any mentor or textbook! Do not assume you are superior to other members of the team just because you are senior.
  3. Some professions actually hold better solutions for an individual than the medical establishment. We’re now approaching heresy, I know. Indulge me, kind medical student. In my case, unless I go for the surgical solution with the terrible long rehab and low chance of ultimate success, it is the PHYSIOTHERAPIST who is the treatment team lead. NOT the doctor.
  4. Without access to the case notes, best not to speculate. I love my friends. And people who know me would describe me as an open book. But what I have done with the health professionals involved that I make every effort to avoid with family and friends is tell them exactly where it hurts, how much it hurts, how long it hurts for, what the recovery period from the pain spikes is, and what that means for my daily activities, this is information I choose to share in the context of relationships that can effect change.
  5. As in Medicine, other professions have specialities with different approaches.My friend was taking the brief introduction to physiotherapy and occupational therapy in neuro-rehabilitation, and applying it to my musculo-skeletal condition. There are completely different approaches to take in this situation.
  6. Be my friend, or my doctor, but don’t try to be both. It is always good to be mindful of boundaries in relationships. If you’re my doctor, then I would be surprised if you invited me to your house socially (even if because of Transference I would quite like to be your friend). If, because of Counter-transference, you want to be my friend, then you should talk to a colleague about it and consider allowing someone else to provide my care. Similarly, if you’re my friend, I would be concerned if you felt you wished to review my medical treatment (even if I do occasionally show you unexpected lumps or bumps!) Give me advice to see my G.P., or even offer to take me there!

Dear Reader I bit my lip and didn’t correct her. I just shrugged my shoulders and we continued the conversation. I’m not worried, because I know she has lots more training ahead. In our NHS, she is likely to have to ask everybody she works with to help her at some point. But we have all met people who became doctors and are now arrogant and unable to see the perspective of the people they set out to treat, or the other people involved in their care. I sincerely hope she doesn’t turn out to be one.

What’s the access to my house like? Rubbish. And here’s too much information about how it is in the house, too…in which I discuss adaptations and equipment, transfers and coping strategies

I am in a wheelchair, but live in a very inaccessible home.

The access to my home is up a 1:4 gradient on a pedestrianised hill. The closest to my gate a vehicle can park is 80 metres. I’ve always enjoyed this- the neighbours are friendly, I have a garden extension in the street, there’s less traffic noise and pollution.

But it’s a nightmare now. I can’t safely propel a chair up or down the street, so am dependent on others who are strong enough to manage to keep control of the chair on the way down, or push me allthe way up. When I get to my gate, I have to get out of the chair onto crutches, because the step into the yard is not accessible in the chair. Once across the yard, I then have 4 very steep steps up to the threshold of the house.It’s simplest to crutch my self from the gate straight into the house, if someone can open the door. I can then perch on the arm of the sofa to get my breath back.

My house is err…let’s say “compact”! It means that once in it, it’s very difficult to move about in the chair- luckily, everything on the ground floor is close enough to be crutched to, so I tend to leave the chair folded up near the door for the next time I’m going out. I move from the sofa, where I have the choice of sitting or side lying, to the dining chair, and can crutch into the kitchen in my fetching velcro girdle to make a drink or some food. I can stand briefly in the girdle- for perhaps 10 minutes, before the pain gets on top of me, and I have to go back to the dining chair or the sofa.

I can use my computer side lying on the sofa- hence I’m trying to use blogging, twitter etc to deal with the lack of other activities. I can sit briefly at my dining table, but can only sit for an hour before the pressure on my pelvis becomes uncomfortable. I find it is a cumulative process- once I’ve had my hour or two in total sitting in a day, it’s side lying only for the rest of the day.

I am limiting the number of times in a day I go up and down the stairs, which I do by hanging on the bannister and using the crutch in the other hand. Or, at the end of the day, I go up on my bottom (sobbing from pain optional). I have no need to go upstairs during the day except to use the bathroom, or if I have totally given in and am retiring to bed. Mostly, I avoid going up to the bathroom by using a urinal which I can use and store in the kitchen until my partner gets home. It’s the most humiliating part of this situation, that this has become an unspoken agreement between us- that if he finds it has been used he discreetly empties it and disinfects it.

When I’m upstairs, I need help to get in and out of the bath. I use my OT skills to talk myself through the transfer- I don’t use a bath seat because I prefer not to have adaptive equipment in the bathroom where my toddler could be tempted to use/misuse it. I can’t reach into the bath to put the plug into the hole- my partner tend to run the bath for me before I go upstairs. To get in, I sit on the bottom corner of the bath, get both legs on to the side of the bath whilst being steadied by my partner, then get legs into the bath. I then edge across the bath ’til I’m centralised, and lower myself down on my arms. I have strong arms- which I am now incredibly grateful for! Getting out is the reverse process. Needless to say, I am unable to use the bath or shower if I’m in the house alone, since I am unable to guarantee my safety doing any of this….there’s always the possibility of needing to be physically manhandled out.

I avoid using a raised toilet seat because getting my toddler to retain her independance in toileting is very important to me. This would be very difficult for her if the toilet had a raised seat. I lower myself down gingerly, and use pressure on the crutch handle in front, and a hand behind on the toilet seat, to get back up.

Getting in and out of bed is far easier since I had a bedstick installed. This is a chrome handle at the side of my bed, which I can use to help lower me down or raise myself up. To get into bed, I sit on the bed, grab the bedstick, then simultaneously lower down top half whilst raising legs (keeping legs together), with knees bent, onto bed. Getting out of bed, or into upright in order to take painkillers is the reverse.

Once I’m in bed, due to being 7 months pregnant I lie with a long pillow alongside me. This goes between my knees and ankles, keeping my legs at the correct angle to my pelvis, and also goes underneath my bump to support my back. I can then hug the top of it (again, sobbing optional).

I then put on my splints- did I forget to mention? Another pregnancy complication- I now have carpel tunnel syndrome in both hands and have fetching splints (velco and fabric) to be applied to keep my hand and wrist in neutral whilst sleeping- which helps the fluid drain out and reduce the pain and tingling in my hands. I would upload a picture, but I am sure the mental picture you have is more fetching!

All pregnant ladies go to the toilet several times during the night, especially when they get so big the baby is pressing on the bladder. I’m able to utilise my urinal in the night to avoid this- but unforunately I am still having difficulty getting over my socialisation that you do not release urine over a carpet, nor in the bedroom, nor when sat on the side of the bed next to a sleeping partner. But I’m getting there. It definetely reduces the pain I feel in the morning, when I’m waiting for the first painkillers of the day to kick in, if I have gone through the night without crutching to the bathroom.

A final point- part of the pelvic thing that’s going on. When I either get from lying to sitting or turn over in bed, the bones in my pelvis grind against each other, and “crack”. This is an unexpectedly loud noise, which can wake sleeping partners. It arrives quicker than the pain, which follows speedily after…. but as any Pavlovian conditioned animal will inform you, I only have to hear the crack in the middle of the night to start crying. So far, I haven’t been disappointed by the pain, when it arrives.

So if you find I am grumpy when you come round, and find the house messier than it usually is, or if I ask you to make us both a cup of tea, please understand it’s because this process is difficult, embarrassing, painful and unremitting.

I’m really glad you dropped by for a chat.

What have you been up to today?