On Transverse Myelitis and Guilt

The other day my wife and I were discussing the sinks in our bathroom. There seemed to be a bit of a blockage to the flow. So I removed the drain plug on each, scraped away the muck, made sure the spring mechanism worked to actually plug the sink, and replaced them. They seemed OK to me. This morning I was reading in bed, and she suggested more attention was needed; the sinks were still draining a bit slowly. I suggested getting a brush we have which can be inserted down the sink to brush away any residue on the pipes. Before I knew it, she had done it, and returned triumphant. Well, great! But those jobs used to be mine. And I used to find it no effort to get them done. In fact I have, in the past, taken great delight in assisting the building of a new back end to a house, completely remodelled a kitchen, scampered up and down ladders to paint inside and out of a house.... and so on over about 40 years of my life. Yes, I am a professional man, and an academic, but I am also ‘a bloke’. And I have always taken great delight in achieving bloke things... Yes, I know, very sexist of me... But, the truth.

These days I can still walk somewhat awkwardly, but it is slow and I get tired very quickly. I do a sedentary job, in town, a couple of days a week, but driving for an hour to get to work, getting a coffee mid morning, going to the loo, or just fetching the next patient tire me out. By the end of the day I am satisfied, have enjoyed what I do, but I am exhausted. And walking becomes hard, and that is the time I may get a bit of foot drop – and that can lead to a fall – and that could spell potential disaster. So Jan, a professional person in her own right, comes into work and does see some cases of her own while I am seeing my people. But, in the main, she comes so that she can drive home. I would (and do) struggle doing that. I love that she gives me the support. I love that she is happy to see herself as my carer, but I feel guilty.

Now, Jan does the washing and all that entails. I can, once in a while, help hang things on the line, or help to take dry clothes off the line. She does the shopping; occasionally I can go with her, but usually supermarkets can wear me out in about 15 minutes – up and down aisles, reaching for things, lifting, avoiding people, neon lighting... So Jan does it. I do sometimes help to unload the car – especially heavy items. But I am exhausted quickly and have to sit down. I feel guilty watching her bustle about. She does all the cooking, and takes delight in making sure we have the best possible diet for a neurological disorder; after all she is a dietitian who has published books on care for the elderly...

Jan has some physical problems of her own. Her hands show signs of arthritis, and too much lifting or hard work causes her pain. She is prone to migraine when she is under stress, and needs to retire with analgesics. If she is struggling, I feel guilty. If I was able to do more, then perhaps her hands would not be so sore. If I was able to carry more of the burden of everyday living, perhaps she would get fewer migraines. She never complains, she never berates me for not helping enough. We have been married nearly 50 years, and have always had a good relationship based on kindness and mutual appreciation. We do well. But I feel guilty.

Is the guilt useful ? Probably it has helped me to try to do a bit more exercise every day, to try to be that bit more helpful every day. I have one of those health apps on my phone. It measures every step, every stair I climb. It describes me as ‘sedentary’. Bloody cheek... But that is driving me that bit more. On the other hand, I do have to measure what I do, and I am aware of the little things that suggest I am slowly deteriorating, despite trying to do things to stop that process.

Don’t get me wrong. I am not depressed. I am not mentally flagellating myself. I am not feeling guilty about feeling guilty. I sleep well, eat well, and life has its own quite satisfying rhythm. I enjoy music and film, and sport on the TV. I enjoy writing my papers and books and this blog. I am happy in what I can do, given my impairment. I just feel guilty that I cannot do more in my life’s partnership. I guess I will just have to live with that.