Our middle son has learning difficulties. We love him the way he is. His sister and two brothers had always helped to look after him. Then 12 years ago, a bizarre thing happened that turned the family dynamics upside down.
Our self-reliant eldest, aged 22, a geologist, became ill. He wept down the phone. “Mum, Dad. Help me.” He came home to convalesce. He couldn’t even carry his own backpack. He could hardly make it up the stairs. Middle son, then a teenager, was mystified, even mildly annoyed, by his big brother’s helplessness.
It took nearly a year to get a referral to the specialist. The diagnosis: chronic fatigue syndrome. The prognosis: vague. Palliative care was offered but no cure. After a short remission, he was sliding back into another relapse of fevers and physical frailty, when our youngest son, aged 19, a music student, became unwell. Like his eldest brother, he struggled on his own till he could scarcely walk. Then came home.
The consultant was unfazed to see a familiar parent in the clinic, accompanying a different young man. He explained the likelihood of a genetic predisposition to CFS. Now we really were a disabled family. Social services got involved. Wheelchairs arrived, bed-bottles, bathroom aids, health visitors and personal carers.
Son 2, despite his learning disabilities, became the strong, dependable one. At weekends, he pushed wheelchairs, unloaded the dishwasher, or simply kept up morale by bringing home flowers and an eager healthy smile.
Every CFS victim is dealt a slightly different hand of symptoms. Muscle pain, recurrent fevers, lack of co-ordination affected both sons, along with headache, disrupted sleep patterns and digestive disorders. Son 1 also had tinnitus and ulcerated feet. Son 3’s speciality was light sensitivity. His sunglasses, worn on even the darkest days, gave a misleadingly jaunty appearance. Both had periods of mental disorientation — what they termed “fuzzy brain”.
I am glad now that I didn’t know how long their frailty was to last. I called our home the Cottage Hospice, and took my own daily dose of Côtes du Rhône. “Mum, you’re drinking too much,” one son summoned up the strength to caution. “I am currently in better shape than either of you,” I replied defiantly. “When you’re better, you can tell me what to do.”
I said “when”, not “if”. It felt like lying. We had no idea if they would ever recover. I regret that I didn’t do enough to protect our sons from the many daft alternative treatments pushed at them. With traditional medicine providing so little hope, both invalids were vulnerable to new magic promises, however exhausting, expensive and disappointing they always turned out to be.
One self-appointed expert insisted that the illness had been induced by the stress of growing up with a mentally handicapped brother. If so, how had our daughter escaped? She, like our middle son, stayed well and provided the practical back-up. Whenever I, or her father, looked like wilting, she left her work as a medical researcher in Glasgow and came home to take over. Or took them, one at a time, to live with her, to give everybody a few months’ respite.
It wasn’t all horror. There were moments of intense wonder which would never have happened if we hadn’t been forced together into our social isolation. One dark winter afternoon, Son 1 was overcome with claustrophobia. “If I can make it out to the wheelchair, will you take me somewhere?” he asked. “Anywhere.”
We ventured outside into the darkening North Norfolk countryside. Pushing a wheelchair along a rutted track is hard. Riding in one when you’re so thin your bones stick out, is worse. Yet he wanted to go on and on into the dusk. “Please Mum. Anything to be away from the house.” We reached the top of the hill as a flight of curlews lifted out of a waterlogged field of kale, mewing like airborne kittens while the rest of the world was utterly silent.
One April afternoon, after shingles and a plague of throat infections, Son 3 tottered outside where I was sitting with his grandmother, and asked, “May I sing to you?” He then sang right through the numerous verses of The Red Flag. “Thank you,” he said. “I just needed somebody to listen.” Then, back to bed.
Recovery was imperceptibly slow, over several years. They husbanded their renewed vigour cautiously. Began to play chess. Learnt poetry. Studied spiders. With incredible courage, they joined local classes in maths, British Sign Language, tap-dancing.
There’s always a tendency to infantilise the sick. Acquaintances ask: “How are your boys?” No, not boys. These are men, whose teens and twenties drained away, but who are now living their own lives once more.
Son 3 is back at university, halfway through his music degree. He has a flat on the seventeenth floor of a tower block, has dispensed with wheelchair, carer and walking-stick and on a good day can climb all the stairs.
The lingering scars are, he says, not physical but mental — lapses of confidence, bouts of sadness at the losses. Son 1 swapped geology for a less strenuous activity, poetry, and married an artist. Their baby is named Hope. The rest of us constantly rejoice that the trial is over. Admirers have said, “You have all grown so much stronger as a result.” Pish! Why should seeing sons or brothers in pain make anyone strong? The strength is that we were already a united family. Our togetherness had grown out of having a learning-disabled son/brother whose extreme needs in childhood had pushed each of us towards greater tolerance and understanding than we would ever have had without him.
The children’s writer Rachel Anderson based her new book on her experience of CFS in her family. This Strange New Life (published by Oxford University Press, £5.99), is about a schoolgirl facing the devastation to home life when her brothers become disabled with the syndrome
Mum, I’m so tired . . .
Chronic fatigue syndrome (CFS) is the nearly same as myalgic encephalomyelitis (ME) and is also sometimes called post viral fatigue syndrome (PVFS).
CFS is becoming the preferred term, because ME refers to a very specific physical condition. CFS applies more generally to a profound and continuing tiredness which is not relieved by sleep or rest. Other symptoms vary but may include muscle and joint pain, poor concentration, headaches and sensitivity to light.
There is no scientific agreement on the causes but there is some evidence that CFS does run in families, suggesting either an infectious agent as a cause, or an inherited genetic susceptibility. Members of the same family may respond similarly to stress.
Other predisposing factors are thought to be an altered immune response due to previous infections, exhaustion and stress.
For further information, contact Action for ME: www.afme.org.uk; 0845 123 2380
