Denial is a coping mechanism that gives you time to adjust to distressing situations — but staying in denial can interfere with treatment or your ability to tackle challenges.
~ Mayo Clinic
When you look at the first part of the quote above, strictly speaking I can say that Master T is in denial. Over the course of the past three and a half years — that’s how long ago Master T’s current health condition started — towards the outside he has been in denial. He needed and still needs the time, the denial, as a coping mechanism.
Let me explain…
Master T’s leg was amputated in his early teens, which means he has been living with a prosthetic for 44 years now. He always kept in mind that there will come a time when he will end up in a wheelchair. The problems he has now, started when he was just over 50, and I still remember the night he told me that he only expected to end up in a wheelchair when he was 80, and not for it to be a possibility in his fifties.
During this challenging time for him — no, for us, as I suffer too, but absolutely in NO way to the extent he does — many people have offered advice. All people do so from their own able-bodied perspective (is this called ‘ableism’?) and some even get angry when either Master T or me tell them their solution is not a solution at all.
It’s his process
Why doesn’t he sit in a wheelchair for a couple of weeks to allow his leg to heal?
Short answer: No, can’t be done.
Longer answer: it can’t be done, because Master T knows that the moment he sits in a wheelchair, the chances are that he might not get out of it anymore. Even if the intention is to be in it for only a couple of weeks. It was the same with the walking stick I bought him shortly after his problems started, and he could barely walk properly. The stick stood in the corner for two months before he finally decided to try it, and within a couple of weeks he knew he would never be able to walk without it anymore. Inside the house it’s okay but not outside. The moment he steps outside, he has to use his stick. Even if he only goes out in the garden. And believe me, he has tried to walk without.
All of this is part of his process of adjusting to a distressing situation. Master T needs to go through a psychological process where he has to accept that he will end up in a wheelchair earlier in his life than he anticipated. It’s a process that can’t be rushed and can’t be forced on him. He has to be mentally ready to accept that every time he ventures outside of the house, he will have to be in a wheelchair, and maybe even inside the house. It’s his process, and where we appreciate people wanting to help with their suggestions, this process is still his to go through.
Quality of life
Why doesn’t he leave the prosthetic off for a couple of weeks so his leg can heal?
Short answer: No, can’t be done.
Longer answer: Three months after his problems start, Master T couldn’t drive anymore. He had to drive 60 kilometers to work, and the same distance back again. He just couldn’t anymore, with the constant pain in his leg, so he started working from home. There was a period of 8 weeks where he left his prosthetic off as much as possible, but not for 24 hours. Why not? Because during daytime he’s home alone. He needs to get his own food and drink, needs to be able to go to the loo. People then say he can walk with crutches… how? How do you walk with crutches and get yourself something to drink? People also suggest he walks behind a walker. Er… I suppose then he will have to put his prosthetic leg on?
There are so many practicalities to think of. Now this doesn’t mean that Master T goes about his business as if nothing is wrong with him. No, where he keeps the prosthetic on all day — taking it off and putting it back on several times a day seem to aggravate the problems because of the way our bodies seem to ‘swell’ during daytime — he sits most of the time. He only stands up when it’s absolutely necessary. To get a drink. Food. Go to the loo. He leaves the housework to me. The only thing he still does, is to cook a couple of times a week. He insists.
Master T has been under professional help since this all started. In a space of 18 months he had 7 new prosthesis, but once they realize that is not going to do the trick, he was sent to a rehabilitation specialist and from there to a dermatologist. He’s gone through so many different treatments: ointments, 32 times light therapy and taking immune suppressants for 4 months. We’ve recently been to see the prosthesis engineer again and there is now something new we are going to try. One or two treatments will have to be done before that, but then a new kind of prosthetic looms on the horizon. However, we first have to get past the situation with the corona virus, as that rightfully so takes precedence over every other non essential health support needed.
Denial as coping mechanism
Denial indeed is the coping mechanism that gives Master T the time to adjust to what he is going through, but he is only denying up to a certain level. He is a very rational person, which is why he doesn’t allow the denial to interfere with treatment or his ability to tackle challenges. And, he still has me by his side, because I will not allow him to not go for treatment, or not tackle the challenges. And I will not deny him to sit in a wheelchair once he comes to the decision to do so. We are in this for the long run, through sickness and health, and if that means I have to walk behind a wheelchair, that is what I will do.
© Rebel’s Notes