Still from the film “The Diving Bell and the Butterfly” (2007, directed by Julian Schnabel). Photo from the site 1tv.ru
Exactly five years ago I lay in a coma, from which I emerged into a completely different life, and the life of my family also became completely different. Together we had a lot to understand, a lot to learn anew. Today I want to talk about common mistakes that relatives of a disabled person make
Construction of walls
This happens involuntarily, of course. But relatives of a person who has become disabled begin to build an invisible wall between their family and the rest of the world. Perhaps this is their way of trying to protect themselves. They may reject other people's help, be embarrassed to invite people into their home, withdraw into their grief - not understanding the pain this causes to you. Moreover, such a wall separates the disabled person from members of his own family, which makes him feel even more lonely.
My heavy cross
At a certain point, I discovered that you can’t just live under the same roof with me, you can only “look after” me. Even when I stopped needing diapers and spoon-feeding, learned to walk again, and started doing some housework, they didn’t talk about me any differently. The feeling that you are a heavy burden, a cross that your loved ones are now forced to drag through life, does not add to your joy. Even if this is the case, even if your relative really needs constant care, try to prevent him from feeling like someone’s unbearable burden.
Sit, I'm on my own
This is probably the most common mistake. When they don’t trust you to peel potatoes or go to the store. “I’ll do it myself, I’ll hurry up, sit down,” they tell the disabled person. What can he do? Just stare at the TV.
This is what the Tyumen doctors wrote to me in the IPR (individual rehabilitation program) in the column “sociocultural rehabilitation” - “watching television programs is recommended”: - both laughter and sin, considering that I don’t watch TV at all, precisely because of its ability dull, lull and kill the desire for any activity.
This is how the terrible thing is born - “disabled thinking”, when “I am disabled, everyone owes me, and let this world revolve around me.” Needless to say, the universe lives according to its own laws.
By the way, no one has canceled the concept of “fine motor skills”. Everyday activities, even the smallest ones, are very useful for its development.
If…
Reasoning that “it was necessary to do this in that situation, and that in that situation” is probably correct, but, alas, fruitless. We are not living in the past. And now there is the main thing - a living person. Think about it, a third of strokes end in death in the first month. And here is a survivor. That is, I. Isn't this a reason for joy: alive! Yes, the ambulance arrived late, yes, the operation was performed a few days later, yes, meaningful rehabilitation actually began years later. There's probably a chance that today I could run, jump and do somersaults. But the past cannot be returned. The main thing is that I have the present.
It's my own fault
Finding someone to blame can lead to even more unpleasant consequences. Since the past can be foggy, which is why the outlines of the search can be very unsteady, the disabled person himself is here, here, and, therefore, all the blame for what happened can be placed on him. It’s very scary to hear the phrase: “Why did I invest so much in you!” You feel worthless, powerless, poisoning everything around you.
A person with disabilities cannot always stand up for himself, especially immediately after an experience. And he can believe that yes, the true culprit of all the troubles that have befallen him is himself. He has more than enough time for such “fruitful” thoughts and feeding the destructive feeling of guilt.
This is scary because the doors to the future are closed in front of a person, and he begins to live only in the past, constantly picking at his wound. This should not be allowed, so please be more careful. Even if he himself is to blame (for example, he dived in the wrong place), he has already been punished enough.
Return to the beautiful yesterday
This is probably done with the best intentions, but... Constantly remembering loved ones about how good it was “before...” does not make the life of a disabled person better.
According to the waves of their memory, the relatives of the disabled person float to where there were diapers, and today's disabled person was a rosy-cheeked baby for whom “everything was fine.” He learned to read, went to music school, showed promise and was generally a child prodigy. Was. And here is the same advice as above. Return to the “now” more often.
Return to a terrible yesterday
All my life I will be grateful to my parents for what they did for me when I was between life and death (closer to the latter option). But this, thank God, is in the past: intensive care, my mother’s sleepovers on chairs, my father’s lessons in walking on crutches, fussing with my feeding and breathing tubes. Terrible time. But why do they return there so often? “Do you remember how we were flying home from St. Petersburg and they didn’t want to put you on the plane?”, “Do you remember how I slept on chairs for three months and spoon-fed you?”, “And how we first got to the bus stop, and how rejoiced you were?” I remember. But I don’t want to constantly return my thoughts to that terrible dream.
The psychologist wife explains: this is a trauma, it must be experienced. But for a disabled person this is a much greater trauma. Try to bore him as little as possible with such memories.
“In front of you is a disabled person of such and such group”
This is what my wife sometimes says (a psychologist, as I already said), for example, when on the subway someone wants to sit in the seat that I have already taken. Or when my rights are somehow violated. At the same time, she knows perfectly well that I can stand up if necessary. He also knows that there is no need to remind me once again that I am disabled. He even writes articles on this topic. And he also writes about the fact that the word “disabled” is generally quite offensive. But the unconscious desire to protect overpowers knowledge. No need to defend me. Nobody offends me!
"Go?"
Words in general are a terrible thing. For some it’s a small thing, they said it and forgot, but for a person with a disability it’s painful and offensive. Recently, one wheelchair user wrote to me in a letter: “The seemingly ordinary phrase: “Well, let’s go,” means a lot to a wheelchair user. I really want to hear these words! But no, they will definitely say: “Well, let’s go?”
Check, check a hundred times what you say to a disabled person. Listen to yourself.
Dressed - and okay
I didn’t pay attention to it for a long time, I had no time for it. But I recently realized how important it is for a person with disabilities to be neatly and, if possible, beautifully dressed, shaved, combed, etc. Even if he sits at home all the time, even if there is no one to watch him.
Unfortunately, very often such people wear some kind of rags - and don’t even pay attention to it, just like I did in my time. I had only awkward oversized jeans (for going out and growing up), the same sneakers, and a single old sweater. Everything else is homemade, you can’t look at it without tears and you can’t go out into the street wearing it. In such clothes you feel like a prisoner imprisoned for life. He has no future, no prospects, he is locked in a cell and will never have anything else. No wonder they put ugly uniforms on prisoners. It doesn’t just make it more difficult to escape, it is also a punishment – a moral one.
Buy your loved one normal clothes - comfortable and even fashionable. You will see that this is important to him.
Cheese or sausage?
In the life of a disabled person there is much less freedom than other people. Including freedom of choice. He lives according to a routine, like Rain Man, and over time he gets used to it. Give him the opportunity to choose at least something. The breakfast menu, the style of the jacket you will buy him, the color of the wallpaper in his room if you are planning to do some renovations. When they finally started asking me about something, I realized that I had completely forgotten how to choose. I'm studying now - and I like it.
Let me sneeze!
“For every sneeze you can’t say hello,” says the saying. No matter how it is. Relatives find strength and time for this. As soon as I just clear my throat, I immediately hear a barrage of questions about my health. But from an ordinary sore throat to a hospital bed is a long way. How can I convey this idea to my loved ones: don’t worry in vain!
“A normal person can sneeze as much as you like,” they will tell me, “but you must take into account ... etc.” and so on." It's time to howl from these lectures. After all, we want nothing more in the world than to be “normal.”
You shouldn’t constantly remind your loved one about their health - there are much more interesting topics. In addition, there is a danger that, tired of being constantly tugged at, he will simply hide his well-being from you, and this, indeed, can be fraught.
Daughters and mothers
“Are our shoes too tight? Wasn't it cold for us outside? Isn’t the porridge hot?” Ordinary people hear these questions only in early childhood. We are doomed to always answer them - at 30, 40, and 50 years old... Even for those closest to us, a disabled person is often not the same person as them, just with physical characteristics, but a baby. But how you don’t want to fall back into childhood and become a living doll!
Educational program
Not all relatives of people with disabilities understand the intricacies of rehabilitation, although it is certainly necessary to undergo the necessary educational program, because this process must be continuous. But often, especially in the provinces, your family will rehabilitate you solely based on their own ideas about illness and health. My father is sure that the best rehabilitation for a stroke patient is a bathhouse and weight training equipment. My mother is sure that the paresis will pass as soon as the muscles become stronger, and every time she meets me she tries to urgently fatten me up. We don't see each other often; she lives in another city. She buys more and more new products, not noticing that they no longer fit in the refrigerator, and even more so in my stomach. He gets offended when I try to resist: “If you don’t eat, where will the strength come from to recover?” Unfortunately, such “rehabilitation” does not improve my health - just extra pounds, which I don’t need at all.
Okyushki
Mom can be forgiven for everything, but what sometimes really jars is the feigned cheerfulness.
In the summer, I was in the hospital and friends came to see my neighbor, a former taxi driver. “It’s okay, we’re so old, in a year at most we’ll be traveling together again! And we’ll celebrate the New Year for real, not with lemonade.” He was silent and just sighed quietly, realizing that he would never drive again, and drinking would simply kill him.
And my school friend found the following words of support: “It’s not so bad to be disabled. You don’t need to go to work, you don’t need anything, mind your own business, surf the Internet, the state gives you food and drink.” Positive thinking in action! I suggested that he change places...
Stop sign
Well, the most terrible point. When your loved ones refuse to see you - the way you have become - the same person you were before. And most importantly, they don’t see your future. And, the worst thing is, if you believe this nonsense yourself. “Nonsense,” I say, because I’ve been through it myself. There is always a future. Even if they say with skepticism: “The future? In the sick?! When a healthy person is not sure of the future!” There is a wide scope for discussion here, but that’s a completely different story...
I am not at all sure that these points will eliminate misunderstandings in the family. Moreover, each disabled person will have their own list of dos and don'ts. But I have no doubt about one thing: if there is love and respect, this is the main thing. However, the presence/absence of love is a special topic that concerns not only disabled people...
A quarrel with your husband means his trust and respect for you.
Such a dream may also portend some troubles outside the family.
If a wife dreams of a very affectionate husband, problems may arise in the family.
If a woman dreams that her husband left her for no apparent reason, in reality this means a short-term cooling of the relationship, which, in any case, will be replaced by mutual attraction and agreement.
If you dreamed about your husband being sick or tired, this means that one of your relatives is ill.
If you see your husband cheerful and cheerful, life will open up brilliant prospects for you.
There will be material well-being in the house.
If you dreamed that your husband was in love with another woman, not all is well in the family.
It is possible that your relationship is too monotonous and something needs to be changed in it.
If a married woman dreamed that she fell in love with another man, she is lonely in the family or does not receive satisfaction from intimate relationships with her husband.
If a girl dreamed that she got married, she should pay more attention to her appearance and think about her dignity.
If you dreamed that your husband was leaving, but when leaving home he seemed to become taller - the dream foreshadows that close people will be against your marriage and you will have to fight for your happiness.
If you dreamed of a scandal in which not only your husband, but also another woman is involved, this means divorce or significant losses.
If you dreamed that your husband was killed as a result of a scandal, this is a very bad dream.
If a husband dreams that he is fighting with her, peace will come to the family.
If a wife caresses her husband, it means profit.
Interpretation of dreams from the Dream Book of ShereminskayaSubscribe to the Dream Interpretation channel!
Question: Assalamu alaikum! I wanted to know your opinion and get advice on an issue that has been bothering me for a long time. More than a dozen years ago, we had an accident, after which my husband became a group 1 disabled person. He is paralyzed, his legs and pelvic organs do not function. He is now in a wheelchair. All this time I am next to him. But the only thing is that as a woman, I recently began to feel bad. I endured it for many years, but apparently nature takes its toll. My husband is somehow trying to satisfy me, but, of course, it’s all wrong, although I always pretend not to offend him. I can’t ask him for a divorce, I think it would completely kill him. It's not easy for him anyway. Cheating on him is a sin. But lately these thoughts can’t get out of my head. What should I do? I'm not old yet, I'm not even forty. (Russia)
Answer:
In the name of the Gracious and Merciful Allah!
Assalamu alaikum wa rahmatullahi wa barakatuh!
May Allah reward you for your patience and concern for your husband’s feelings!
It is natural, human nature, that you experience bodily desires, and you cannot in any way be blamed for having them.
You make this sacrifice for the sake of Allah by continuing to live with your spouse, despite the fact that it is difficult for you. Remember that Allah rewards you for every moment of difficulty that you experience for the sake of His pleasure. The hadith reports the following words of the Prophet (PBUH):
ما يصيب المسلم، من نصب ولا وصب، ولا هم ولا حزن ولا أذى ولا غم، حتى الشوكة يشاكها، إلا كفر الله بها من خطاياه
If a Muslim experiences any difficulty, illness, misfortune, sadness, harm or anxiety, even if it is as insignificant as being pricked by a thorn, this becomes atonement for his sins before Allah. (Bukhari. Sahih. - No. 5461, narrated by Abu Hureyra)
Remember also that the greater the sacrifice, the greater the reward from Allah:
المشاهدة بقدر المجاهدة
The reward is commensurate with the effort.
It is clear that your situation is difficult. Therefore, we recommend that you be patient and hope for a reward from Allah. Allah will reward you for your sacrifices in ways that are incomparable to worldly pleasures. For your sacrifice, Allah will reward you with the sweetness of faith, His closeness and love, which will make worship (ibadat) desirable for you. You will find comfort, joy and peace in prayer, recitation of the Qur'an, prayers and remembrance of Allah, and at the end of your worldly life you will have unimaginable rewards and pleasure awaiting you in the next world.
In your situation, there are certain ways that can somewhat ease the burden of bodily urges for you. Depending on your circumstances, these methods are permitted in Islam.
a) Spouses are allowed to masturbate each other. You can take advantage of this relief in your situation.
b) Because of your husband's position, he will be allowed to use sexual toys and devices to ensure your satisfaction.
Note. In principle, the inability of a husband to satisfy his wife's bodily needs due to impotence caused by illness or injury is sufficient grounds for a woman to seek a divorce if her intention is to protect herself from vice by subsequent marriage to a decent Muslim who can take care of her physical and other needs. After all, one of the main reasons for nikah is protection from extramarital affairs.
(These norms have their own details, for which you should contact the competent alims if your personal situation requires it.)
And Allah knows best.
Wassalam.
Mufti Suhail Tarmahomed
Fatwa Center (Seattle, USA)
Fatwa Department of the Council of Ulama (KwaZulu-Natal, South Africa)
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