WHEN EMERGENCIES TURN YOUR LIFE UPSIDE DOWN
Christiane Tourtet B.A.
August 01, 2008
Letīs say, you feel happy, are in love, walk hand in hand with your handsome lifetime partner, exchange loving glances, make jokes, laugh, kiss, exchange words of love. Life is so beautiful,here , in Tallahassee, Florida, the sky is marvelous, birds are singing, flowers are in blooms, the scents of honeysuckle and jasmine are enrapturing, the temperature is warm, everything is so perfect in your life, it is like paradise on Earth. You think of the wonderful times spent together, and so many more to come.Like going to the beach, go to your favorite restaurants, go shopping together, do gardening, photography, listen to romantic music, and so much more. You feel on the top of the world, and donīt even think that anything can possibly happen to your heavenly happiness. Then suddenly, out of nowhere, a hurricane, with the most violent destructive force has come into your so perfect life, and has destroyed it in a matter of seconds.
It looks like your partner just had a stroke, also known, as Cerebral Vascular Accident (CVA), and due to brain damage caused by lack of oxygen to part of his brain, can no longer speak or write, and has difficulty swallowing. My God, you say, what is happening? This canīt be! No, not to us! You think of calling 911, as it should be done, but your partner, who still cannot believe what is happening, indicates to you, to wait, hoping that perhaps, the problem will be solved by itself, in a couple of days!
Reluctantly, you agree to do so, but are terribly worried. You are not much familiar with stroke symptoms, but, it does look to you, now, that many things point out to be a stroke. Two days later, your partner still is unable to talk, or write, and this time, you decide, that he must go to the hospital. Your partner indicates to you, that before going to the hospital, he wants to go to see his doctor, first. Ok, you say! Your partner is pointing to you the direction to go to the Doctorīs Office, but has made a mistake, so you have to take a long detour, to finally end up in the right direction and park at the Doctorīs office.
It is about 90 degrees outside, quite humid, and you are sweating and really worried. You beg the Doctorīs aid , to please have the Doctor see your partner, even though he does not have an appointment, as he cannot speak, write, is slightly limping from his right leg, and by now you strongly suspect he has had a stroke. The Doctorīs aide takes your partnerīs blood pressure! My God, it is 190 over 116, and his pulse is 105! The Doctor sī aide, takes you aside and tells you that it is very serious and to take him right away to the emergency room.
This time, you are really scared, as it appears that every second counts. Your heart is pounding, the heat is unbearable, and you know that your own blood pressure is also rising dangerously high, but there is no time to think about that, except to go quickly to the emergency room. God, the traffic is so heavy, it seems to take forever! Ah! at last, here is the hospital! What a huge complex, must be a mile long! Where is the hospital entrance and parking? Many cars are parked in front of what seems to be the entrance of the hospital! There is not a single parking space available! There are several buildings on the right and on the left, but where is the Emergency Room?
You notice a big red sign that says Emergency Room, but below it says Womenīs Pavilion. What is this? Could it be an Emergency Room for women only? Few feet away, at the edge of the road, is another big red sign with Emergency Room written on it. Must be this one then! You try to back off from wherever you are. It is very difficult as the road is narrow, traffic is piling up behind you, and people are blowing their horn furiously at you! You get out from your car, and explain to the driver of the van behind you that you have an emergency, and ask him to please try to back up. Finally you are able to pull out from the place, and enter on the road where the second emergency sign is.
Again there are buildings just about everywhere, but where is the Emergency Room? You try to find a parking place somewhere, which you finally do find, get out in more than 90 degrees heat with your partner, walk toward some of these buildings, inquire just about everywhere, where is the Emergency Room?.
No, the emergency room is not here, you are told! You are sent back to the road where the first Emergency Room sign was. Again, you have to try to find a parking place somewhere. Alright, you just did! Now again, in the torrid heat you walk with your partner towards some other buildings, desperately asking where is the Emergency Room. You are told it is quite far from here!
You see two maintenance men driving an electric cart. You frantically waive at them, asking them to show you where the emergency room is. The men point to you a place far away and you beg them to show you the way explaining to them that your partner had a stroke. They agree to do that! In the mean time, you have to find where in the world did you park your car? You get confused, go one way, then another way, and finally locate your car.
You follow the two maintenance men in their electric cart, and they leave you at the entrance of the garage of the emergency room! It is quite dark in there! You finally find a parking space! It is a huge garage, and you see massive buildings on the right, on the left, but where is the emergency room? There are no signs anywhere to guide you to it! In the garage you ask someone, who seems to be an employee of the hospital, where is the emergency room? He mentions that it is somewhere upstairs, and you ask where the staircase is. He vaguely points out to you the direction, and again, you are lost
Where is the staircase? You ask somebody else, who, this time sends you in the opposite direction. You finally find the staircase. You try to climb it with your partner, see a door, try to open it, but, oh no! it is hermetically closed! You go to another level, same thing again. Another door is hermetically closed!
You keep going, terrified that your partner, including yourself are both going to die of a heart attack or stroke, in this place. Looks like your own heart rate is about 146 a minute as you have tachycardia, so you know whatīs itīs like, your blood pressure must be real high too, and tears of despair are streaming down your cheeks!
Dear Lord at every staircase, about six of them, there is an hermetically closed door. Now, you have to go down all those stairs, and you truly think that your partner and yourself are going to die right there, among all those huge pipes that you see in the staircases, and who is going to find you?
You are back, now, in the garage, and you see an elevator. Where does this elevator will bring you? Would it be in the emergency room or somewhere else in this huge hospital? There are no signs to indicate that this elevator will bring you to the emergency room.
You are afraid to take this elevator, for two reasons. You donīt know where you will end up, and yes, letīs admit it, you had some real bad experiences in elevators, many times in your life, such as elevators, getting stuck in between floors, or cables from elevators breaking all of a sudden, so, you have always tried to avoid elevators.
Now, you have to face the situation. Your partner who knows about your dreaded experiences in elevators, takes you by the hand, and finally, pulls you with him in the elevator. You do not see any emergency button in that elevator and pray that nothing wrong will happen. In a matter of seconds, you are upstairs, in the open, and walk toward the automatic doors of the emergency room .At last, there it is!
You go to the reception desk, and explains that your partner seems to have had a stroke, has extremely high blood pressure, is unable to talk, write, has weakness in his right side, and that his doctorīs aid, is the one that told that he should be brought right away to the Emergency Room. There must be at least one hundred people waiting in the emergency room. You hope that since your partner has such a life-threatening emergency, he will be seen by a doctor, shortly.
If only you would have known, what will follow! Your partnerīs blood pressure is being checked, and it is even higher than in his doctorīs office. An electrocardiogram is being done, lots of questions asked , applications filled out, and the endless wait starts .It must have been around 3.00 p.m., when you finally had reached the emergency room, and it has been several hours , now, that you are waiting.
The blood pressure of your partner is rising more and more, and no doctor has assisted him yet! If a person who had a stroke is in such life- threatening situation, and is not being taken care of quickly, what is the use of an emergency room, you think!
Again, your partner has his blood pressure checked, and it is higher than ever .It is getting dark outside, and by now, you are frantically telling to the employee at the reception desk, that your partner is going to drop dead any minute if no one sees him! You are told that there were other emergencies before him, and no rooms/ beds available in the emergency room.
You keep going every few minutes to the desk, requesting that he be seen urgently by a doctor. Finally, you both are taken in the back of the Emergency Room, and had to wait at least one more hour before a doctor comes to see your partner. Some bloods tests are taken, many other tests are done, another doctor comes into the room, and mentions to you, that it appears to be a stroke. You are told at 1.00 am that your partner has to be hospitalized in the intensive care at the Neurological Unit. Dear Lord, you had been waiting since 3.00 pm! 10 hours waiting for a person who had a stroke and needed immediate care!
Your partner and you are flabbergasted! Both of you came in the emergency room , just to find out what was wrong, expected to stay may be about an hour or so there, and go back home with some prescriptions! So what to do now? At 1.00 am, pitch dark, and 40 degrees outside, it is unthinkable, of going back home! Besides you do not want to let your partner in such critical condition alone. So, in your summer dress and summer shoes, shivering non-stop, in this freezing hospital, you go with your partner in his room.
You had nothing to eat or drink since the day before at noon time, and you are dead tired,
cold, hungry, sick, and in shock of whatīs happening.. You curl-up in the very hard uncomfortable reclining chair, which will be your bed for the next few days. All night, nurses, assistant nurses, and other personnel are in and out of the room.
Your partner is taken for large numbers of tests, hooked on tubes, IV, given shots, and medications. Your partner has never been hospitalized in his entire life, nor did he take a single medication in his life. You know how fragile he is, and are so afraid that his body wonīt be able to tolerate all those massive X rays, RMI, scans, doses of medications which can have so dangerous side effects. Frankly, you are afraid that all this, is really going to kill him! You look at him! He does not look good at all! So much blood has been taken from him, and no food has been given to him. My God, how much he must be suffering! Your heart sinks at the helplessness you feel, of not being able to relieve his sufferings!
All alone, in the dark, shivering, even though, a cotton blanket has been given to you upon your request, you have not been able to sleep even for a second. Due to your acute condition of Multiple Chemical Sensitivity, (MCS) the biocides, disinfectants, pesticides, cleaning products, sanitizers, medications and a host of other toxic chemicals, are making you terribly ill. You feel so sick that you are praying to God to let you stay alive, for your loved ones and especially for your partner, who needs you the most.
You are also terribly worried about your mother, who must have been calling you at home, and that you cannot reach, since long distance calls are not permitted from the hospital. Finally, you dial the phone number of a family friend. Thanks God, he is at home! You tell him about the emergency that has occurred, ask him to notify your mother, and give to him the phone number of the room, your partner and yourself are in, so that your mother can contact you. Few minutes later, the phone rings, and trying to control your trembling voice and rolling tears, you finally talk to your sweet mother. She had been so worried, calling all night, at your place. You feel much better emotionally to have talked to her and to your family friend.
But, your eyes, nose, throat, and lungs are burning terribly, your legs experience weakness, as if you had the flu, your heart rate is erratic, pulse in the 140, you feel nauseated, experience respiratory difficulties. Every second, due to your Multiple Chemical Sensitivity, (MCS), becomes a torture for you, as this hospital have failed to have a policy of accommodation for persons disabled with Multiple Chemical Sensitivity (MCS), under the law the Americans with Disabilities Act (ADA). The cotton blanket, full of disinfectants, is making you deadly ill.
You wonder how, are you going to survive? And will your other half survive the ordeal he is going through? If at least you could have some tolerable food to eat, something to drink, you might feel a little bit better. You have told just about everyone, about your Multiple Chemical Sensitivity (MCS), distributed brochures to some of the hospital personnel , have requested accommodations under the Americans with Disabilities Act, for your condition, but, alas, the hospital has not trained its employees for this illness/disability and has not made a policy of accommodation under ADA, for this potentially life-threatening disability. So, you are stuck, in your sufferings! Tears streaming down your cheeks, and sobbing, you hold the hand of your partner .My God is he going to survive? No one cares about your needs for eating, drinking, being made comfortable as an overnight "guest" in the Neurological Intensive Care Unit.
Now, whatīs happening? What is this warm liquid running from your nose? Oh! no, you are bleeding profusely from the nose. This is one of the many reactions you have, when exposed to irritating chemicals such as biocides, sanitizers, disinfectants. You ask a nurse for Kleenex .About 15 minutes later a box of Kleenex is brought to you. Thanks God, that in the mean time you had some Kleenex in your purse!
By now, you have agonizing stabbing pain in the frontal part of your head. The pain is unbearable. You feel you have to get some fresh air or you are going to die. It must be by now 3.00 am, and someone at the desk in the Neurological Unit proposes that a security guard could take you outdoors. On one hand, you desperately need some fresh air to alleviate the terribly painful reactions to the toxic chemicals used at this hospital on the other hand, it is really cold outside, and quite risky for a woman, to be standing, outside at this time, even with a security guard. So, you decide to wait until daylight.
It is not until 9.00 am, that a security guard is able to accompany you downstairs, outdoors. You start breathing some fresh air, and it feels really good. The pain in the head is decreasing and the nose bleed stopping. After about 10 minutes outside, in the cold, you enter the hospital again, get lost in the hall, and ask an hospital employee, to help you find the Neurological Unit, and to accompany you in the elevator, which, bless his heart he does courteously!
Dear Lord, the stabbing pain in the head starts again, and the nose bleed as well, with terrible nausea, burning in the eyes, nose, throat, lungs, respiratory problems, legs weakness and much more, upon breathing the biocides and other toxic chemicals in the hospital.
You need something to eat. You are told the Cafeteria is downstairs. You really donīt feel good and ask for someone to accompany you .To your dismay the request is denied several times. Upon insisting and asking for accommodations under the Americans with Disabilities Act (ADA), finally someone takes you downstairs to the cafeteria, where you buy a sandwich and a pint of milk. At least something to eat and drink! It does not taste very good, but under the circumstances, it is better than nothing!
After, again , so many tests, nurses, therapists, and other employees coming in and out the room , your partner is brought something to eat and a thick liquid to drink, as from now on , he will be allowed only thick drinks after his stroke, to prevent choking, aspiration, and related problems. You learn that the stroke has damaged the left side of his brain, and has affected his speech, writing, and swallowing (Dysphasia). His reasoning, intelligence, intellect are intact, but from now on, he will have to be on puree foods, with low salt, fruits, vegetable, boiled chicken, low fat milk, yogurt, ice-cream, and food will have to be put in a blender. No thin liquids will be allowed, such as water, orange juice, sodas, unless a thickening powder will be added to them to a nectar consistency. The high blood pressure and cholesterol did it, you were told, by his doctors. You simply cannot believe what is happening!
Your partner looks so sick, and so thin in just a few days, that you can barely recognize him! A very unappetizing supper is brought to him with the thick drink. Yuk! Looks like dog food !
You desperately want to communicate with him, but the few words he tries to say are a jargon that cannot be comprehended. This is so hard, for both of you! Tears are in his eyes and yours. Your eyes lock painfully, and love flows between both of you. You try to stay strong, but you canīt! Tears, now, are really streaming down your cheeks. You excuse yourself telling you have to go to the bathroom, where you close the door and cry your heart out.
Employees come in an out of the room almost non-stop. The pain in your head is terrible, the sickness you feel cannot be described, and you beg the doctors and personnel to hurry up the discharge papers, as you feel so terribly ill. Finally after lunch time, the papers are signed, and an employee brings your partner in a wheelchair to the garage where you had parked your car. My God, it has been three days, since you have been in the outside world. Three days, without sleep, without washing yourself, with virtually no food, feeling cold, and in pain, and with your partner now, who appears to you so much changed, as if he was someone else.
You are back home now, and it feels good, yet, the shock of what has happened is worse than ever. Your partner now, stays in bed all of the time, barely eats any blended food, barely drinks any liquids with the thickening powder, loses weight daily, and is literally perishing in front of your eyes. His face is caved in, as if he is coming from famine, and you simply cannot believe what is happening! You frantically call all the people you both know, telling about the tragedy that has happened into your lives.
People who worked with him are in shock. You burst in tears in the arms of the employee at your favorite fast food restaurant, where you have been a customer for over 20 years, and tears are streaming down her cheeks too! Colleagues of your partner are coming to your home, and tears are rolling down their cheeks. One of them sobs, non-stop for several minutes holding your hand and your partnerīs hand. while tears are streaming down your face.
Then the reality of life sets in. All the things that oneīs have tendency to take for granted, such as, cutting the grass, trim bushes, repair a leaking faucet, change an electric bulb, put air in a tire, taking the trash down the road, pay bills, go groceries shopping, and so much more, now become your overnight responsibility. So, you frantically search for someone to cut the grass, do the yard maintenance, bring groceries at home, do home repair, call the city to be able to get an application to get service to bring the heavy trash can down the road.
Bills are coming from everywhere, the phone does not stop ringing, e-mails pouring in. The mailbox is full of bills everyday from hospitals, doctors, medical facilities, insurances, applications forms to be filled out. There are errors in the bills, a wrong insurance contract number has been used. You try to contact the health insurance, hospitals, home health care, doctorīs offices, social security, Medicare, in order to find out what does the insurance pay or does not pay. You learn about primary and secondary health insurance. You are induced several times in errors by many employees, in regard to, who pays what, with potentially dire consequences.
You have to cope with endless answering machines, just about everywhere, and automated systems, which do not apply, most of the time to your situation, so you cannot get through, and have to spend countless hours every day trying to figure out a way to resolve the unbelievably complicated situation you are in. To your utmost frustration and despair, you find out that it is virtually impossible to talk to an employee, or if you do, you keep getting conflicting answers, to the same questions, with, seemingly no way out. Then you have to deal with new employees who know nothing about their jobs, leave you hanging on the telephone endlessly, until you are forced to hand up, without having an answer to your important questions.
You also find out to your utmost dismay, that, unless your partner has signed forms authorizing you to discuss, his medical records, hospital, insurance bills, Social Security, finances, Medicare, private health insurance, etc, no employee will talk to you, in this regards, due to privacy laws. You feel trapped from everywhere, as you had no idea that such system even existed. You call all the agencies available for help, such as running errands, picking up groceries, going to the post office, pick up prescriptions etc and find out that the cost can be exorbitant, even for just one week. So, if you are lucky enough to have some good friends willing to help, you realize, that, this is the best route to follow.
Then, you have to try to painfully adapt to your new life, with your partner, who can no longer communicate with you verbally, or in writing, who has dysphasia, and constantly be on the alert that he does not get any blended food, or thick liquid into his lungs, as this could be fatal to him due to the weakness of his muscles in his throat, that prevents him to cough forcefully enough to expel whatever could go into his lungs. Blood pressure has to be carefully monitored every few hours. No more restaurants, wonderfully tasting foods, cookies, candies, fried foods. Just bland tasting food, low salt, low fat, low cholesterol, put several times a day in a blender, to take very slowly, one mouthful at a time, swallow, wait for a few seconds, swallow again, making sure that your partner is in an upright position of at least 90 degrees and head bowed down. You also learn that after consuming any blended food or thick liquids, your partner has to be in that upright position for at least 30 minutes. You have to buy ahead of time a full supply of thickening powder to be mixed with water, orange juice, soda etc as well as to have baby food type purees, available at home , that can be eaten directly from the jars , in case of power outage, since there would be no electricity to grind food in a blender.
You also have to try to find in a hurry some emergency medical alert medals and bracelets, (double set, in case of loss, or breakage) and places of businesses that can engrave them, so that your partner can wear them, with his medical information engraved, such as "Stroke Patient Unable to talk/write/ dysphasia, thick liquids only" .If space permits, you think that it would be a good idea, to add your partnerīs name, phone number, as well as his doctorīs name and phone number.
Then, you realize, that it may be also, a good idea to have an Emergency Medical Alert card in his wallet, as well as carrying with you and in his wallet, a list of reliable persons with their home, office, cell phone numbers, and even their e-mail addresses, so they can be contacted in case of an emergency. Speech therapy is a big hope for many stroke patients, to be able, to talk again, some day, in a way that they will be understood and it also usually helps with the dysphasia problem. So, you pray and hope that this will happen with your partner. The abrupt change in lifestyle, is extremely hard, and seems almost unreal!
Yet, after several weeks of speech therapy, by an excellent speech language pathologist, and many prayers from loved ones, friends, and caring people, you start to see your partner improving. He can now consume more quantities of foods, drink more liquids, and, yes, it is solid food, and thin drinks, such as water, orange juice, sodas .and that is wonderful! He is putting on some weight, and his face starts filling up. He is feeling more energetic, and he starts walking in the house and the yard.
Some sparkles are in his beautiful brown eyes that you love so much, and yes, he smiles now, quite often during the day. He listens with you, to his favorite music, he is able to write slowly but clearly, and it may be a matter of just a few more months until he may be able to speak much more comprehensibly and again walk happily, hand in hand with you, exchanging loving glances, making jokes, laughing, enjoying blue skies, birds singing, get enraptured by the warm scents of honeysuckle and jasmine, and yes, life will be beautiful again!
© 2008 Christiane Tourtet, all rights reserved
It looks like your partner just had a stroke, also known, as Cerebral Vascular Accident (CVA), and due to brain damage caused by lack of oxygen to part of his brain, can no longer speak or write, and has difficulty swallowing. My God, you say, what is happening? This canīt be! No, not to us! You think of calling 911, as it should be done, but your partner, who still cannot believe what is happening, indicates to you, to wait, hoping that perhaps, the problem will be solved by itself, in a couple of days!
Reluctantly, you agree to do so, but are terribly worried. You are not much familiar with stroke symptoms, but, it does look to you, now, that many things point out to be a stroke. Two days later, your partner still is unable to talk, or write, and this time, you decide, that he must go to the hospital. Your partner indicates to you, that before going to the hospital, he wants to go to see his doctor, first. Ok, you say! Your partner is pointing to you the direction to go to the Doctorīs Office, but has made a mistake, so you have to take a long detour, to finally end up in the right direction and park at the Doctorīs office.
It is about 90 degrees outside, quite humid, and you are sweating and really worried. You beg the Doctorīs aid , to please have the Doctor see your partner, even though he does not have an appointment, as he cannot speak, write, is slightly limping from his right leg, and by now you strongly suspect he has had a stroke. The Doctorīs aide takes your partnerīs blood pressure! My God, it is 190 over 116, and his pulse is 105! The Doctor sī aide, takes you aside and tells you that it is very serious and to take him right away to the emergency room.
This time, you are really scared, as it appears that every second counts. Your heart is pounding, the heat is unbearable, and you know that your own blood pressure is also rising dangerously high, but there is no time to think about that, except to go quickly to the emergency room. God, the traffic is so heavy, it seems to take forever! Ah! at last, here is the hospital! What a huge complex, must be a mile long! Where is the hospital entrance and parking? Many cars are parked in front of what seems to be the entrance of the hospital! There is not a single parking space available! There are several buildings on the right and on the left, but where is the Emergency Room?
You notice a big red sign that says Emergency Room, but below it says Womenīs Pavilion. What is this? Could it be an Emergency Room for women only? Few feet away, at the edge of the road, is another big red sign with Emergency Room written on it. Must be this one then! You try to back off from wherever you are. It is very difficult as the road is narrow, traffic is piling up behind you, and people are blowing their horn furiously at you! You get out from your car, and explain to the driver of the van behind you that you have an emergency, and ask him to please try to back up. Finally you are able to pull out from the place, and enter on the road where the second emergency sign is.
Again there are buildings just about everywhere, but where is the Emergency Room? You try to find a parking place somewhere, which you finally do find, get out in more than 90 degrees heat with your partner, walk toward some of these buildings, inquire just about everywhere, where is the Emergency Room?.
No, the emergency room is not here, you are told! You are sent back to the road where the first Emergency Room sign was. Again, you have to try to find a parking place somewhere. Alright, you just did! Now again, in the torrid heat you walk with your partner towards some other buildings, desperately asking where is the Emergency Room. You are told it is quite far from here!
You see two maintenance men driving an electric cart. You frantically waive at them, asking them to show you where the emergency room is. The men point to you a place far away and you beg them to show you the way explaining to them that your partner had a stroke. They agree to do that! In the mean time, you have to find where in the world did you park your car? You get confused, go one way, then another way, and finally locate your car.
You follow the two maintenance men in their electric cart, and they leave you at the entrance of the garage of the emergency room! It is quite dark in there! You finally find a parking space! It is a huge garage, and you see massive buildings on the right, on the left, but where is the emergency room? There are no signs anywhere to guide you to it! In the garage you ask someone, who seems to be an employee of the hospital, where is the emergency room? He mentions that it is somewhere upstairs, and you ask where the staircase is. He vaguely points out to you the direction, and again, you are lost
Where is the staircase? You ask somebody else, who, this time sends you in the opposite direction. You finally find the staircase. You try to climb it with your partner, see a door, try to open it, but, oh no! it is hermetically closed! You go to another level, same thing again. Another door is hermetically closed!
You keep going, terrified that your partner, including yourself are both going to die of a heart attack or stroke, in this place. Looks like your own heart rate is about 146 a minute as you have tachycardia, so you know whatīs itīs like, your blood pressure must be real high too, and tears of despair are streaming down your cheeks!
Dear Lord at every staircase, about six of them, there is an hermetically closed door. Now, you have to go down all those stairs, and you truly think that your partner and yourself are going to die right there, among all those huge pipes that you see in the staircases, and who is going to find you?
You are back, now, in the garage, and you see an elevator. Where does this elevator will bring you? Would it be in the emergency room or somewhere else in this huge hospital? There are no signs to indicate that this elevator will bring you to the emergency room.
You are afraid to take this elevator, for two reasons. You donīt know where you will end up, and yes, letīs admit it, you had some real bad experiences in elevators, many times in your life, such as elevators, getting stuck in between floors, or cables from elevators breaking all of a sudden, so, you have always tried to avoid elevators.
Now, you have to face the situation. Your partner who knows about your dreaded experiences in elevators, takes you by the hand, and finally, pulls you with him in the elevator. You do not see any emergency button in that elevator and pray that nothing wrong will happen. In a matter of seconds, you are upstairs, in the open, and walk toward the automatic doors of the emergency room .At last, there it is!
You go to the reception desk, and explains that your partner seems to have had a stroke, has extremely high blood pressure, is unable to talk, write, has weakness in his right side, and that his doctorīs aid, is the one that told that he should be brought right away to the Emergency Room. There must be at least one hundred people waiting in the emergency room. You hope that since your partner has such a life-threatening emergency, he will be seen by a doctor, shortly.
If only you would have known, what will follow! Your partnerīs blood pressure is being checked, and it is even higher than in his doctorīs office. An electrocardiogram is being done, lots of questions asked , applications filled out, and the endless wait starts .It must have been around 3.00 p.m., when you finally had reached the emergency room, and it has been several hours , now, that you are waiting.
The blood pressure of your partner is rising more and more, and no doctor has assisted him yet! If a person who had a stroke is in such life- threatening situation, and is not being taken care of quickly, what is the use of an emergency room, you think!
Again, your partner has his blood pressure checked, and it is higher than ever .It is getting dark outside, and by now, you are frantically telling to the employee at the reception desk, that your partner is going to drop dead any minute if no one sees him! You are told that there were other emergencies before him, and no rooms/ beds available in the emergency room.
You keep going every few minutes to the desk, requesting that he be seen urgently by a doctor. Finally, you both are taken in the back of the Emergency Room, and had to wait at least one more hour before a doctor comes to see your partner. Some bloods tests are taken, many other tests are done, another doctor comes into the room, and mentions to you, that it appears to be a stroke. You are told at 1.00 am that your partner has to be hospitalized in the intensive care at the Neurological Unit. Dear Lord, you had been waiting since 3.00 pm! 10 hours waiting for a person who had a stroke and needed immediate care!
Your partner and you are flabbergasted! Both of you came in the emergency room , just to find out what was wrong, expected to stay may be about an hour or so there, and go back home with some prescriptions! So what to do now? At 1.00 am, pitch dark, and 40 degrees outside, it is unthinkable, of going back home! Besides you do not want to let your partner in such critical condition alone. So, in your summer dress and summer shoes, shivering non-stop, in this freezing hospital, you go with your partner in his room.
You had nothing to eat or drink since the day before at noon time, and you are dead tired,
cold, hungry, sick, and in shock of whatīs happening.. You curl-up in the very hard uncomfortable reclining chair, which will be your bed for the next few days. All night, nurses, assistant nurses, and other personnel are in and out of the room.
Your partner is taken for large numbers of tests, hooked on tubes, IV, given shots, and medications. Your partner has never been hospitalized in his entire life, nor did he take a single medication in his life. You know how fragile he is, and are so afraid that his body wonīt be able to tolerate all those massive X rays, RMI, scans, doses of medications which can have so dangerous side effects. Frankly, you are afraid that all this, is really going to kill him! You look at him! He does not look good at all! So much blood has been taken from him, and no food has been given to him. My God, how much he must be suffering! Your heart sinks at the helplessness you feel, of not being able to relieve his sufferings!
All alone, in the dark, shivering, even though, a cotton blanket has been given to you upon your request, you have not been able to sleep even for a second. Due to your acute condition of Multiple Chemical Sensitivity, (MCS) the biocides, disinfectants, pesticides, cleaning products, sanitizers, medications and a host of other toxic chemicals, are making you terribly ill. You feel so sick that you are praying to God to let you stay alive, for your loved ones and especially for your partner, who needs you the most.
You are also terribly worried about your mother, who must have been calling you at home, and that you cannot reach, since long distance calls are not permitted from the hospital. Finally, you dial the phone number of a family friend. Thanks God, he is at home! You tell him about the emergency that has occurred, ask him to notify your mother, and give to him the phone number of the room, your partner and yourself are in, so that your mother can contact you. Few minutes later, the phone rings, and trying to control your trembling voice and rolling tears, you finally talk to your sweet mother. She had been so worried, calling all night, at your place. You feel much better emotionally to have talked to her and to your family friend.
But, your eyes, nose, throat, and lungs are burning terribly, your legs experience weakness, as if you had the flu, your heart rate is erratic, pulse in the 140, you feel nauseated, experience respiratory difficulties. Every second, due to your Multiple Chemical Sensitivity, (MCS), becomes a torture for you, as this hospital have failed to have a policy of accommodation for persons disabled with Multiple Chemical Sensitivity (MCS), under the law the Americans with Disabilities Act (ADA). The cotton blanket, full of disinfectants, is making you deadly ill.
You wonder how, are you going to survive? And will your other half survive the ordeal he is going through? If at least you could have some tolerable food to eat, something to drink, you might feel a little bit better. You have told just about everyone, about your Multiple Chemical Sensitivity (MCS), distributed brochures to some of the hospital personnel , have requested accommodations under the Americans with Disabilities Act, for your condition, but, alas, the hospital has not trained its employees for this illness/disability and has not made a policy of accommodation under ADA, for this potentially life-threatening disability. So, you are stuck, in your sufferings! Tears streaming down your cheeks, and sobbing, you hold the hand of your partner .My God is he going to survive? No one cares about your needs for eating, drinking, being made comfortable as an overnight "guest" in the Neurological Intensive Care Unit.
Now, whatīs happening? What is this warm liquid running from your nose? Oh! no, you are bleeding profusely from the nose. This is one of the many reactions you have, when exposed to irritating chemicals such as biocides, sanitizers, disinfectants. You ask a nurse for Kleenex .About 15 minutes later a box of Kleenex is brought to you. Thanks God, that in the mean time you had some Kleenex in your purse!
By now, you have agonizing stabbing pain in the frontal part of your head. The pain is unbearable. You feel you have to get some fresh air or you are going to die. It must be by now 3.00 am, and someone at the desk in the Neurological Unit proposes that a security guard could take you outdoors. On one hand, you desperately need some fresh air to alleviate the terribly painful reactions to the toxic chemicals used at this hospital on the other hand, it is really cold outside, and quite risky for a woman, to be standing, outside at this time, even with a security guard. So, you decide to wait until daylight.
It is not until 9.00 am, that a security guard is able to accompany you downstairs, outdoors. You start breathing some fresh air, and it feels really good. The pain in the head is decreasing and the nose bleed stopping. After about 10 minutes outside, in the cold, you enter the hospital again, get lost in the hall, and ask an hospital employee, to help you find the Neurological Unit, and to accompany you in the elevator, which, bless his heart he does courteously!
Dear Lord, the stabbing pain in the head starts again, and the nose bleed as well, with terrible nausea, burning in the eyes, nose, throat, lungs, respiratory problems, legs weakness and much more, upon breathing the biocides and other toxic chemicals in the hospital.
You need something to eat. You are told the Cafeteria is downstairs. You really donīt feel good and ask for someone to accompany you .To your dismay the request is denied several times. Upon insisting and asking for accommodations under the Americans with Disabilities Act (ADA), finally someone takes you downstairs to the cafeteria, where you buy a sandwich and a pint of milk. At least something to eat and drink! It does not taste very good, but under the circumstances, it is better than nothing!
After, again , so many tests, nurses, therapists, and other employees coming in and out the room , your partner is brought something to eat and a thick liquid to drink, as from now on , he will be allowed only thick drinks after his stroke, to prevent choking, aspiration, and related problems. You learn that the stroke has damaged the left side of his brain, and has affected his speech, writing, and swallowing (Dysphasia). His reasoning, intelligence, intellect are intact, but from now on, he will have to be on puree foods, with low salt, fruits, vegetable, boiled chicken, low fat milk, yogurt, ice-cream, and food will have to be put in a blender. No thin liquids will be allowed, such as water, orange juice, sodas, unless a thickening powder will be added to them to a nectar consistency. The high blood pressure and cholesterol did it, you were told, by his doctors. You simply cannot believe what is happening!
Your partner looks so sick, and so thin in just a few days, that you can barely recognize him! A very unappetizing supper is brought to him with the thick drink. Yuk! Looks like dog food !
You desperately want to communicate with him, but the few words he tries to say are a jargon that cannot be comprehended. This is so hard, for both of you! Tears are in his eyes and yours. Your eyes lock painfully, and love flows between both of you. You try to stay strong, but you canīt! Tears, now, are really streaming down your cheeks. You excuse yourself telling you have to go to the bathroom, where you close the door and cry your heart out.
Employees come in an out of the room almost non-stop. The pain in your head is terrible, the sickness you feel cannot be described, and you beg the doctors and personnel to hurry up the discharge papers, as you feel so terribly ill. Finally after lunch time, the papers are signed, and an employee brings your partner in a wheelchair to the garage where you had parked your car. My God, it has been three days, since you have been in the outside world. Three days, without sleep, without washing yourself, with virtually no food, feeling cold, and in pain, and with your partner now, who appears to you so much changed, as if he was someone else.
You are back home now, and it feels good, yet, the shock of what has happened is worse than ever. Your partner now, stays in bed all of the time, barely eats any blended food, barely drinks any liquids with the thickening powder, loses weight daily, and is literally perishing in front of your eyes. His face is caved in, as if he is coming from famine, and you simply cannot believe what is happening! You frantically call all the people you both know, telling about the tragedy that has happened into your lives.
People who worked with him are in shock. You burst in tears in the arms of the employee at your favorite fast food restaurant, where you have been a customer for over 20 years, and tears are streaming down her cheeks too! Colleagues of your partner are coming to your home, and tears are rolling down their cheeks. One of them sobs, non-stop for several minutes holding your hand and your partnerīs hand. while tears are streaming down your face.
Then the reality of life sets in. All the things that oneīs have tendency to take for granted, such as, cutting the grass, trim bushes, repair a leaking faucet, change an electric bulb, put air in a tire, taking the trash down the road, pay bills, go groceries shopping, and so much more, now become your overnight responsibility. So, you frantically search for someone to cut the grass, do the yard maintenance, bring groceries at home, do home repair, call the city to be able to get an application to get service to bring the heavy trash can down the road.
Bills are coming from everywhere, the phone does not stop ringing, e-mails pouring in. The mailbox is full of bills everyday from hospitals, doctors, medical facilities, insurances, applications forms to be filled out. There are errors in the bills, a wrong insurance contract number has been used. You try to contact the health insurance, hospitals, home health care, doctorīs offices, social security, Medicare, in order to find out what does the insurance pay or does not pay. You learn about primary and secondary health insurance. You are induced several times in errors by many employees, in regard to, who pays what, with potentially dire consequences.
You have to cope with endless answering machines, just about everywhere, and automated systems, which do not apply, most of the time to your situation, so you cannot get through, and have to spend countless hours every day trying to figure out a way to resolve the unbelievably complicated situation you are in. To your utmost frustration and despair, you find out that it is virtually impossible to talk to an employee, or if you do, you keep getting conflicting answers, to the same questions, with, seemingly no way out. Then you have to deal with new employees who know nothing about their jobs, leave you hanging on the telephone endlessly, until you are forced to hand up, without having an answer to your important questions.
You also find out to your utmost dismay, that, unless your partner has signed forms authorizing you to discuss, his medical records, hospital, insurance bills, Social Security, finances, Medicare, private health insurance, etc, no employee will talk to you, in this regards, due to privacy laws. You feel trapped from everywhere, as you had no idea that such system even existed. You call all the agencies available for help, such as running errands, picking up groceries, going to the post office, pick up prescriptions etc and find out that the cost can be exorbitant, even for just one week. So, if you are lucky enough to have some good friends willing to help, you realize, that, this is the best route to follow.
Then, you have to try to painfully adapt to your new life, with your partner, who can no longer communicate with you verbally, or in writing, who has dysphasia, and constantly be on the alert that he does not get any blended food, or thick liquid into his lungs, as this could be fatal to him due to the weakness of his muscles in his throat, that prevents him to cough forcefully enough to expel whatever could go into his lungs. Blood pressure has to be carefully monitored every few hours. No more restaurants, wonderfully tasting foods, cookies, candies, fried foods. Just bland tasting food, low salt, low fat, low cholesterol, put several times a day in a blender, to take very slowly, one mouthful at a time, swallow, wait for a few seconds, swallow again, making sure that your partner is in an upright position of at least 90 degrees and head bowed down. You also learn that after consuming any blended food or thick liquids, your partner has to be in that upright position for at least 30 minutes. You have to buy ahead of time a full supply of thickening powder to be mixed with water, orange juice, soda etc as well as to have baby food type purees, available at home , that can be eaten directly from the jars , in case of power outage, since there would be no electricity to grind food in a blender.
You also have to try to find in a hurry some emergency medical alert medals and bracelets, (double set, in case of loss, or breakage) and places of businesses that can engrave them, so that your partner can wear them, with his medical information engraved, such as "Stroke Patient Unable to talk/write/ dysphasia, thick liquids only" .If space permits, you think that it would be a good idea, to add your partnerīs name, phone number, as well as his doctorīs name and phone number.
Then, you realize, that it may be also, a good idea to have an Emergency Medical Alert card in his wallet, as well as carrying with you and in his wallet, a list of reliable persons with their home, office, cell phone numbers, and even their e-mail addresses, so they can be contacted in case of an emergency. Speech therapy is a big hope for many stroke patients, to be able, to talk again, some day, in a way that they will be understood and it also usually helps with the dysphasia problem. So, you pray and hope that this will happen with your partner. The abrupt change in lifestyle, is extremely hard, and seems almost unreal!
Yet, after several weeks of speech therapy, by an excellent speech language pathologist, and many prayers from loved ones, friends, and caring people, you start to see your partner improving. He can now consume more quantities of foods, drink more liquids, and, yes, it is solid food, and thin drinks, such as water, orange juice, sodas .and that is wonderful! He is putting on some weight, and his face starts filling up. He is feeling more energetic, and he starts walking in the house and the yard.
Some sparkles are in his beautiful brown eyes that you love so much, and yes, he smiles now, quite often during the day. He listens with you, to his favorite music, he is able to write slowly but clearly, and it may be a matter of just a few more months until he may be able to speak much more comprehensibly and again walk happily, hand in hand with you, exchanging loving glances, making jokes, laughing, enjoying blue skies, birds singing, get enraptured by the warm scents of honeysuckle and jasmine, and yes, life will be beautiful again!
© 2008 Christiane Tourtet, all rights reserved