Mother Logs Son's Early AIDS Battle

Virginia Marie Conlon kept a log of Mike's initial bout with pneumocystis pneumonia, a condition that confirmed a diagnosis of AIDS.  Dr. Michael Paul Conlon, PhD., my parent's second child and son, was just 39 years old when he received the official medical news that sealed his fate.  Mike had known several years earlier about his high risk factors.  He was part of the effected community -- a rapidly growing group that knew all too well of this strange, yet deadly epidemic -- where homosexual men regardless of socioeconomic status, were being wiped out in large numbers. 

Michael once told me that he thought he had had AIDS for quite a while before he actually came down with symptoms.  He believed he contracted AIDS from a one-night stand -- a man who, Mike had found out, had died many years earlier from the illness. Mike lived in fear of the repercussions from that encounter. But after a decent amount of time had passed and Mike remained symptom-free, he began to feel like he dodged a bullet.

But his luck ran out.  At the time of Mike's diagnosis, in 1986, AIDS was essentially a death sentence.  There were no drug "cocktails"  to slow the disease's insidious onslaught, which weakens the body's immune system leaving it vulnerable to a host of deadly infections.  In fact, the drug AZT was not yet released.  It was about to hit the market, and just in time, since it helped keep Mike alive for three more years after his first round with pneumocystis pneumonia. 

But that extra time more likely stemmed from the tender loving care that my parents bestowed on Michael throughout his illness. After Mike's recovery from that first hospital stay,  Mike left his job at the Department of Education in Washington, D.C., and came back home to spend his remaining years in Rutherford, New Jersey,  in the house where he was raised and where his parents still resided, and near where most of his grown siblings lived. 

My parents had made a pact  that together they would see Mike through this ordeal, and indeed, they were with him to the bitter end.  At the moment of Mike's death, I saw Mom and Dad reach for each other from across Mike's deathbed and clasp hands. It's an image that's forever imprinted on my retina and in my soul. 

That touch spoke volumes.  It voiced my parent's courage and enduring devotion to Michael and to all their nine children.  It revealed an unshaken and profound Christian faith,  for they had passed one of life's most difficult trials -- the death of a child -- with their belief intact.  In my parent's view, Mike was entering a new life, one that is everlasting and shared with their Lord in heaven, along with his angels and saints.  But most poignantly, the joining of my parents hands symbolized what  Mike meant to them.  Together, through love, they  had created Mike, bringing him into this earthly world and raising him to become the wonderful, fun, intelligent, good, and much loved man that he was. Now, 41 years after giving Mike birth, they were sorrowfully letting him go.

My brother Mike died on April 28,1989.  He was 41 years old. Two weeks earlier, to say goodbye, he had given me a diamond ring (once our maternal grandmother's engagement ring) to remember him by.  I cherish it, and wear it often. It sparkles beautifully on my finger. I loved Mike.  And I know my grandmother was there to welcome him into heaven.

Mom's Log on Mike's Illness - Beginning in 1986

August 18 – Monday, Backtracking to this date and trying to record some of the thoughts and happenings of Mike's illness: This was the morning of the hurricane at the shore. Weather was miserable. Everybody was getting up and commiserating about the rain and what they'd do for the day. Mike looked awful. I told him so, and he made the decision to go to his doctor (Passaic) up home. He left by noon. When he called in the evening, he said he was having X-rays next morning at 8:00. If we called him at home (our house) at l0:00, we would find out what was up.

August 19 – Tuesday, After the storm at the beach, I was on the beach early to "catch the rays" (as the kids say). At 10:00 I left my beach chair, towels, etc. there and went to a phone booth to call Mike. I never got back to the beach. Mike was being admitted to Passaic General--pneumonia. Gina was taking him to the Admitting Office and would get him settled. Gina and Jean had not started their vacations yet. They were planning to join us at the shore Thursday. I left the shore by noon. Tom drove me. By 2:30 I was at the hospital visiting Mike.

August 20 – Wednesday, Dad came up from the shore today. We stayed up--no sense going back down to be with the vacationers. Besides the quiet house (176 W. Newell) gave us a little breathing space--catching-our-breath-time. Gina and Jean finished work and went to the shore. Thank God they were home here when Mike got here Monday.

August 21 – Thursday, A rainy day for those at the shore. Mike's getting one test after another. X-ray shows double pneumonia. At first intramicine was given Mike intravenously. He had a bad reaction. The same drug was then given to him orally (up until Monday when it was determined what type pneumonia he had.)

August 22 Friday - Since Tuesday, Dad and I have been going to the hospital two times a day. For Dad and me, vacation, or should I say "the shore", has been forgotten. It has been good to have this quiet time at home--knowing, hoping that those at the shore are making the most of their week.

August 23 Saturday −Vacationers came home today, wanting news of Mike. He's still having one test after another. Over the weekend, not much is done. Jim, Mary Sue, Juliet, and Mara are leaving at 6:30 tomorrow morning to go straight through to Milwaukee. Jim starts work

August 25 Monday - When Dad picked me up at work today (5:00 pm), he told me the doctor, Dr. R (Passaic General), had told him that Mike has pneumocystis pneumonia--AIDS related. Tomorrow morning the doctor will tell Michael.

August 26 Tuesday − This was the worse day! Kate and Dad went to the hospital to be with Mike when he was given the news. I could not go to work. Used my dentist appointment tonight as an excuse: teeth troubles. My stomach is out of control. I cannot make it stop churning. Mike asked the doctor: "Does this mean I am an AIDS patient?" The doctor's reply: "Yes. AIDS - Acquired Immunodeficiency Syndrome ARC - AIDS-related Complex Dr. R says "Mike has been preparing for this for a long time. He will take the news better than the family. (Initially, that seems to be the way it is. He IS taking it better than the family.)

August 27 Wednesday − Mike is allergic to sulphur so the drug that he will receive for the treatment of pneumonia due to pneumocystis carinii is PENTAM 300 (Sterile Pentamidine Isethionate). "Pentamidine isethionate should be administered intramuscularly or intravenously only. The recommended regimen for adults and children is 4 mg/kg once a day for 14 days. The benefits and risks of therapy with pentamidene isethionate for more than 14 days are not well defined. Mike is calling all his friends--frantically.

August 28 Thursday 7:30 a.m. −Actualizing my decision to record this "event" in our lives--I don't know if it's a good decision, but I'm going to try to follow it through and see where it leads. When I have time, I'll back-track to Monday, the l8th, the day of the hurricane when we were all at the shore and Mike was sitting on the couch looking so poorly. As for today, it seems we feel the worst is over. Really it is only beginning. I find my stomach still needs a dose of Pepto this morning. After 2:00 I didn't sleep much--just dozed. But no dread, no real fear. Much wonder. This is the day that this log was actually begun. What was written on August 18 up to this date was written by going back and remembering--"back-tracking".

August 29 Friday 7:30 a.m. − Mike is getting visitors now. They tire him although he says his family doesn't. Dad went in the afternoon. I went after work. Kate and Tom went after me. It was Tom's first time. I hear that visit went badly. Mike was preachy and dramatic. I'll hear more about it tomorrow. At work I haven't told Dr. T (Chairperson, Department of Nursing at FDU) about Michael. I feel I've made a firm decision to hold off on that. Concentration on work is difficult. My mind is always on Mike. Also the talk at work is so often medical that I have a hard time, but I "ain't seen nothin' yet. I'm debating whether to call or write my brother, Joe. Mike wants him to know--says he's his Godfather. It's quite a bomb to drop on someone in a phone call. A letter is hard. I think I'll call Joe tomorrow. Dad will have to decide and handle it with his brothers and sisters. Tonight Dad and I have been invited to have dinner at my boss's, Dr. T's, house with her husband, Donald; and Millicent, my co-worker, and her husband. Quite a diversion.

August 30 Saturday − Son Jim called this morning. He was mad because Mike had asked him to call a mutual friend of theirs in Ohio. I was upset because Mike asked me to call my brother, Joe. Visitors today: Joe C. and Roseanne, friends from Educational Testing Service (ETS) and two others

August 31 Sunday 12:00 noon − I'm sitting waiting for Dad to come back from the hospital. He said he was just going to drop off the Sunday paper and be right back--1 1/2 hours ago. My stomach is doing nip-ups. I wonder all the time now what will happen next! Stupid. Thank God for the three-day weekend.

Sept. 1 Monday Labor Day − Mike's visitors today: Me 10:15 a.m. Gina (before going to work) 1:30 p.m. approximately Mary ? time Dad 5:00-6:30 Terry and Jean 6:30-7:30 Terry and Jean said he was SO glad to see them!

Sept. 2 Tuesday 7:35 a.m.− Keeping up writing this log isn't going well. I want to keep trying. I'm glad the Labor Day weekend is over for Mike's sake; he'll see his own doctors today, not substitutes, and the hospital staff should get back to normal. Not that we think his care is insufficient. The nurses seem to be doing an excellent job with a rather difficult patient. With me, Mike complains. Isn't that what Mothers are for? So I fulfill my role. I listen and I advise and I try to be optimistic and try to tell him to realize at this point he's only halfway through he PENTAM 300 that's fighting the pneumonia. Rich R called today. No, that was yesterday. Rich is a long-time friend of Mike's; a boyhood pal that has remained close through college years and even after Mike went to work in different states. Jim's sister, Marge, called today too. Gina took that call, didn't say anything about Mike, and told Marge Dad will call her back "tomorrow". Jim's amazing. He went to the city to deposit his check--visited Mike this afternoon--called Mike's boss in Washington--did the wash--went back to the hospital with me tonight. God, I hope he keeps well. Me too.

MOST NOTABLE QUOTES: "I love the family." "I've got to meet some AIDS patients." ....on the phone to whomever (?) "I'll be on disability a long time." "Dad, give me your blessing." "I don't know what homosexuality is--but I never had to search for someone to love or to love me--I never felt the need--man or woman--because I've always felt loved." "Do Dad and you, Mom, believe in life after death?" "I think the Church is wrong." "If there were just one picture of a man loving a man."

Sept. 3 Wednesday 7:30 a.m. -- Dad heard on the radio that Fairleigh Dickinson University (FDU) is on strike--all three campuses. It will be another interesting day. Let's hope that we see more "fight" in Mike. What I've written here covers so very little of what is happening--of what is going on in the lives of this family. I don't know what I'd do without each one of the children. As Jim said the other night: "I hope the Lord let's us both live to go through this together." It would be difficult alone. Kate spent an hour with Mike's head nurse yesterday. Gina took care of little Tony while Kate was at the hospital. Joe copied some factual material about AIDS--helpful, interesting reading. His school/work begins for the school year today. He's busy. Gin is checking out that apartment at Budd Lake. Tommy's classes start too, but now the FDU strike! He went camping one night over the Labor Day weekend. I don't know if he'll go see Mike again. I can't "make" him go. Joe either. Mary goes to the hospital when she can. Calls Mike often.

Sept. 6 Saturday 10:00 a.m. --Joe had a wisdom tooth pulled yesterday. He was frightened to death; but all is well with him this morning. Gin, Jean, Joe and I had a good talk over breakfast. Joe's going to see Michael today--with Mary. Dad's already on his way. Mike called. He ate "all his breakfast" but wants: 1) a bathrobe; 2) gumdrops, sour balls, marshmallows; 3) NY TIMES. Dad is fulfilling the requests. I'm not going today. I went last night after Dad and I went to IHOP for supper. Mike looks "grey" (this was last night)--very weak--eyes sunken--has lost much weight; but to me there's a decided, good change in his attitude. It's more "real"; not dramatic; not play acting. Am I being too hard on him? But I've seen sick and I've seen sick! He is going to lick this pneumonia. His kidneys are affected now by the PENTAM 300. I really believe that the shot of it that he gets each day at l0:00 a.m. knocks the heck out of him; but he's doing better. Let's hope. Mike's cousin, Maureen B (an RN), called him at the hospital. She heard he had pneumonia. Mike told her. Dad returned Marge's call last night, and he told her. Know what Marge said to Tommie yesterday? When she called here, Tom answered; and Marge asked Tom, "What are you doing now?" Tom said, "Going to school"; and Marge said, "Oh, how long's that going to last--a month!" Thanks a lot! Gina got that apartment in Budd Lake for October 15. The girls are dying to hear about their STATE BOARDS!!!!!!!

Sept. 7 Sunday 9:00 a.m. -- It was so good to talk to Jim Jr. yesterday. I kind of get the feeling that he "perceives" Mike the same way we are--even though Milwaukee is many miles away. I didn't go see Mike yesterday. That didn't mean he didn't have company. Dad, Terry, Joe, Mary and Frank, Kate and Tony--to mention only those I know--went to see him. About Joe's visit: A friend of Mike's was there visiting so Mike suggested that Joe come back another time. Mike did that to Mary and Frank too. When will Joe get back there? We'll see. Do Jim and Mike, our oldest two, feel they know and can talk to our youngest, Joe, Jean, and Tom? Really and truly? Joe, Jean, and Tom feel they don't "know" their older brothers well at all. How is that going to change for Mike now all of a sudden? Jim Jr. and Mike were grown and out of the house when Joe, Jean, and Tom were growing up. Our two older boys' relationship with Joe, Jean, and Tom is different than their relationship with Mary, Gina, Kate, and Terry. Mike expects the three younger ones, to "talk" to him. Well, he has never made it easy over the years. He isn't making it easy now--requesting they come visit him another time when he has friends visiting him at the hospital. I'm going to go to the 10:30 Mass today. So I'm hurrying to get there. Then over to see Mike for my day's visit, since I missed yesterday. The dinner's on and the wash is out. So is the sun. It's a beautiful day!................................... Mike walked with Dad around the halls yesterday. His friend Joe C told him he was giving up, and that he better snap out of it. He better--God help him.

9/5/86 -- Letter to my brother and his family Joe-Penny-Samantha: I’ve been thinking of you awfully much--Japan--summer--etc. I've been fluctuating between calling and writing and finally decided this is best. I've got something to tell you that would be difficult to handle if your phone just rang, and I plunged into this. This way you can read it and assimilate it, and then we can talk over the phone. Michael is in the hospital--I think this is the third week. He has pneumocystis pneumonia, AIDS related. This means he has AIDS. Mostly I felt you should know just to understand my lack of communication--if you have felt any. Things have been rather up in the air here, and my mind is on so many things. I really have been thinking of you--wanting to ask if Sam is back yet--how did it go--and how the job market is and so on. I need you to think of us and your prayers. God is so good to me. Thank God there are so many of us, holding each other up, and loving and supporting Michael. I will be calling you--now that you know. I'll give this letter a week to reach you. I love you all.

Gin Reading this over, I sure have left you up in the air so I'll continue--Mike is about in the "middle stage" of the disease. He could have from two to five years. He is recovering from this pneumonia but believes (and seems to want to) he's dying. So his mental state at this point is the most difficult to handle. As my three nurse daughters say, and the nurses and his doctors at the hospital say, he's far from dead yet. If he thinks he's sick now, he had better think again. So Joe--maybe I'm handling this wrong--maybe I should have called you--but this way seemed best. Again--with love--

Gin 9/14/86 7:30 a.m. -- Letter to my son in Milwaukee Jim: This isn't a birthday letter. This is just me keeping you up-to-date on things happening here. It's an impossible task really, but I want you to know I'm thinking of you and thanking you for what you must go through each time the phone rings in the middle of the night. Mike is putting us all through our paces, as only he can! He says when he can't sleep, he calls you because you "have to pay your dues" to this family too. Yes, that's actually what he's thinking. He's being dramatic--dying already--even when the doctors' tell him, when he's having a pain in front of everyone, that he (the doctor) is not worried. I see our job as sifting through all his dramatics, finding out what his actual physical condition is, and helping him to live up to it. Our job also is maintaining a perspective on our own lives. There are so many things happening because there are so many of us: little Michael's first day of 2nd grade in a new school--Thomas's first day of classes at FDU--Joe's first day at Good Counsel H.S. teaching in the morning and classes at Montclair State in the afternoon and evening--Gina's trying to get an apartment at Budd Lake in a development and them telling her she might not make enough money--me having to have a tooth pulled and added to my upper plate--FDU faculty being on strike, which makes the first day of school rather hectic for the staff--Dad's taking orders from Michael to call here, there, and everywhere, and do this, that, and everything!, etc., etc. etc. These are the things that keep us going, Jim, and I'm not forgetting all the things that are happening to you, Mary Sue, Juliet, and Mara. We get much happiness, Dad and I, from watching each family that is a part of our family. Each is so different, growing, and showing us life in contemporary modes. It is so good of you to come see us each year. I have been trying each day, or at least at moments when I have time, to jot down Mike's progress as it unfolds and the family's progression into this thing. It seems easy for me to write to you about it. Would you mind if I send you my notes periodically? That way I'd feel I was keeping you informed and at the same time using the time to fulfill my resolve to keep a record of our experience.

9/5/86 7:30 a.m. (continuing the letter) -- Mike's day yesterday was better. So much play acting it's hard to sift through it all. He's seen two men from an AIDS group that have helped him. He seems to have a little fight in him now--not much--but a little. Last night when we left him he was expecting a priest, from the same group as the two men, to come to see him. Today he also is expecting to see Joe R (remember his philosophy professor from college days?). He sure is putting the hospital staff and doctors through their paces. In our estimation he is getting superb care. The housekeeping staff neglects him--they seem to be afraid to come in his room--not only because of the contagion! Another thing, Jim, that's frightening me. This is the first that I'm voicing the fear--he's definitely laying the ground work and preparing us for the fact that we are going to have to take care of him when he is released. Whom do I put out of their room, Jim--to make room for him? How do I quiet their fears, all our fears of contagion? Physically, are Dad and I up to this? Yesterday, Tom only got a $40 fine from the judge when he went to court about the ticket that he got for loaning his friend his driver's license. What a charge that gave us. We expected Tom's license to be taken away and then he couldn't earn money--at that job with Frank any way. God is good. Little blessings are now big ones. I'm going to put this much in the mail so you'll know I'm thinking of you--each of you--Mary Sue--Juliet--Mara--hoping you are thinking of all of us--remembering the times together--the killer waves--the highs--the lows. But I will write again soon.

MOM Sept 8 Monday 8:29 a.m. -- What should I say about today--well, I'm feeling for the FDU faculty. I can't imagine what's going to happen today and tomorrow. State Board results are due any day too. As far as Mike's concerned it's a "low" morning--not one of the "highs.". I haven't called him yet. I do before I go to work. Last night from the hospital, after Dad left his room, Mike called. Perhaps all his company over-tired him. He IS very sick now. Gina made the observation, and I think it's true--when he was first in the hospital he was very dramatic, play-acting because he wasn't THAT sick yet had been diagnosed as having a fatal disease, Now, because the PENTAM 300 has taken it's toll on his body, he doesn't have to play act. He really is sick. At times he does fight, but not for long. Oh God, I feel so bad, so guilty, when I don't sympathize the way he wants me to. I want to take him in my arms and hold him and tell him it will go away and not to worry. Since he's been a man though, I don't know him--I mean he has so many many friends that I've never heard of or seen or known--and they all seem to love him and would do most anything for him. I gotta get to work.

Still 9/8/86; it is 5:30. -- Now I'm sitting in Mike's hospital room. He is sound asleep. I've tidied up as I usually have been doing when I come, and that hasn't disturbed him at all. He must need the sleep. It also might mean he won't sleep tonight--and will complain. I do want to visit with him today because tomorrow at 2:30 I'm having a tooth pulled. I'm taking "personal time" of from 2:00 - 5:00 on Tuesday and 9:00 - 5:00 on Wednesday to get this taken care of. Mike has awakened but he's very drowsy. I'm holding his hand with my left hand--so writing this isn't too easy. I told him how the FDU strike is coming along--and that I got a letter from my brother that must have crossed with my letter but that Joe should be getting the news of him soon. Mike looks pale and thin and sick laying here asleep. If we only knew what was in store. A minute ago he said he's "afraid--suppose this drug hasn't knocked out the pneumonia?" They took his X-ray today. Perhaps we'll know tomorrow. If it's clear, the doctor said he could be home by Friday. Are we ready for that? Right now, this minute, it's enough to hold his hand, to watch him sleep, and again to think of him as a little boy, our second son.

Sept. 10 Wednesday 8:15 -- I don't have to go to work today. My tooth was pulled yesterday at 2:30. This morning at 10:00 the dentist will take an impression and by 4:00 this afternoon I'll have my plate back and be ready for work tomorrow. So teeth problems have given me an excuse to goof off. I didn't go see Mike--haven't even called. Dad's kept me very informed. It's been a bad day (yesterday) for Mike. His doctors didn't get in to see him so he was kind of raving--calling Kate and Dad frequently. He wants the results of the X-ray of his lungs to see if the pneumonia's clear. He ate a LITTLE and kept it down. Dad said. Once I get my teeth back, I'll get over to see him. I don't think I have as much sympathy for him as his father does. The FDU strike is over. Yesterday was bedlam. I was there until 2:00, but it was good bedlam to have faculty and students back. The State Boards haven't come yet. Gina and Jean are on edge. It should be this week! My brother Joe called last night. He had received my letter and is writing Mike. Joe took the news so differently than "Aunt" Jane (Jim's sister), for instance. Why am I so calm? At Jane's newest granddaughter's Christening Sunday, RN Coleen (her son David's wife) told her that Mike was very ill. So Jane called to find out what was up. I took the call--told her Jim was out and that he really wanted to be the one to tell her, but Mike was..........etc. She was badly upset. Couldn't really talk or continue the conversation. Everyone reacts differently. Our Mary is having a rough time.

Sept. 11 Thursday 7:10 a.m. -- JEAN CONLON, R.N.A VIRGINIA H. CONLON, R.N. It's official! We have two more Registered Nurses in the family. I was so glad to be home to see the excitement when the mail came yesterday morning. Jean was at work when the two official envelops came. So Kate opened Jean's. Gina opened hers. We're so proud of them. Even Michael smiled. I called work. FDU nursing students--89% passed! GREAT. It would be hard to write down everything the doctor told Kate about Mike's condition now that they've taken an X-ray of his lungs. They will be taking another Friday or Saturday. There's no change in what they see. But "clinically" he's better. He has no fever. No infection. He will be in the hospital five or six more days for observation. His kidneys are affected by the drug so they're watching that. If there is a rise in temperature--a relapse--that's not good. A recurrence of this pneumonia--anything--that's not good. Mike has been getting a drug called something like CRIMALEN to stop his nausea and help him keep down anything he might eat. A side affect of THIS drug is "Hyper-ness". He is so hyper. Now he has a desire for food--home-cooked food, which the doctor says can be brought in. He wants scallops broiled in butter or Mom's chicken, and he wants it NOW! First it was clam chowder; and five minutes after he called to say he wanted it, he called back to say if someone was already on the way with it, "the doctor said he couldn't have chowder, make it scallops and make it now." So after l5 calls in between, he had broiled scallops at 2:00 and broiled scallops again at 7:00 p.m. Now, this morning I've got his chicken in the oven. Today I go back to work. My teeth are in--look good--and feel okay.

3:10 a.m. 9/12/86 -- Can't sleep. It's Friday. I'm looking forward to two days home. Hiding? Mike will be home--here--the doctors are saying--Monday. Will I want to have two days home then? I can't picture him being here--as cantankerous as he was in the hospital last night! I don't know how the nurses and doctors put up with him! Jean says that AIDS patients have a fixation with food. His menu sheet said he was to get a small slice of angel cake, and it wasn't on his tray. Granted, there wasn't much on his tray: 2 cans Pepsi, l container of cranberry juice, l roll with butter and jam, a plastic cup of gumdrops and a plastic cup of marshmallows--plus l ounce of chicken from home. (Not scallops broiled in butter tonight!) Because he has too much potassium, this is what--and only what--the doctor said he could eat. BUT--the angel cake was missing. He called the nurses station, and he told the nurse--counting off each item on the menu, pointing to it on the tray, at the same time saying he wanted his angel cake!!! Who is he going to scream at when he's home? Then: wasn't anybody ELSE (I was sitting there visiting him after work) going to visit him tonight? Jean was working 3:00 to ll:00--Gina was working 3:00 to ll:00--Joe works 8:00 to 8:00. Mary had seen him in the morning after she got the kids to school. Dad had been there twice already; and also Dad was busy picking up Terry at work, repeating the procedure in reverse that they had gone through in the morning to take her car to the repair shop where it was to get a new clutch ($350 much to her dismay.) My visit with Mike was going to be short. I couldn't stay long because I was babysitting for Mary. She has her one class a week on Thursday nights, and Frank had to go to a wake. But "wasn't ANYBODY going to visit" him tonight? This writing just sounds like one long complaint. Perhaps I should think about what Jim (my most patient, wonderful man) pointed out to me when I was getting dressed for work this morning and found that one of the girls had swiped my new pair of panty hose leaving me with none. I was complaining that "it just isn't fair". Jim said "Ma, the girls won't be here much longer to take your pantyhose. They'll be in their own apartments, and you won't have them to complain about." I can't picture Mike being home here. I can't picture Mike not being.

8:35 a.m. 9/13/86 PAT: "Be--all that you can be........" is running over and over and over in my brain. Last night when Dad and I went to visit Mike after work and supper at the Lyndhurst Diner, he was calmer--waiting for his supper, yes, but a little more patiently. It was late when the tray finally came. He ate--really ate--a little chicken, peas, and noodles. But, oh, he looks so sick! We were talking, Mike, Dad and I, about prisoners in concentration camps (comparing the four walls of the hospital room to a cell) and how they survive solitary, and starvation, and isolation from the real world. Mike was really empathizing, sympathizing. Mike looks like a survivor of such a camp. His body is wasted away, his eyes are sunken and have a look I can't describe. He was more patient and calm though and talked about coming home Monday or Tuesday. Then it will "be a time to make decisions". Gina was talking to me yesterday morning--(what a help she has been to me): that all Mike needs now is a little time to do just that, to make decisions, and that we have to help him. Dad, Gina and Kate have an appointment Monday morning with the "Disease Control" person at the hospital to find out about taking care of Mike--and the family--when he's home.

"Being" IS a verb--isn't it? Wasn't that written on our kitchen wall many years ago? Have I written in this log, that Mike asked Dad and me if we believed in life after death? He did in his early weeks in the hospital. I don't know what form that life will take after death, but I do know Mike will always "be" in my heart. Yes, I am grieving for Mike already. Kate, Gina, Jean (my nurses) and I have talked about that process (the grieving process) too. So far, it is such a feeling of love--not loss--that I am not worried.

10:30 Mass--celebrant Joseph Cassidy--EXULTATION OF THE CROSS Offertory Hymn, choir sang "God So Loved the World" Did I mention that the very first time I was visiting Mike at the Hospital, Tuesday 8/l9, when the elevator door opened, who stood there but Fr. Cassidy! He remembered me by name though it must be ten years since I've been connected to Rosary Altar.

7:20 a.m. 9/l5/86 -- Mike's due to come home today about noon. Gin, Kate, and Dad have a 9:00 a.m. appointment with someone in charge of Disease Control at the hospital. Mike's room is ready. We hope we are. Yesterday when I saw him, he was smiling, showered, shaved, combed, calm, "feeling good". I still saw a slight tremor in his head; his concentration and forgetfulness a little better, but his eyes are not his clear bright eyes. I anticipate a difficult day at work--not the work—just maintaining my composure. I'm going to prepare supper now--ready to go in the oven. Before I go to work I'm going to call and order a fruit basket that Mike wants to give the nurses at the hospital. I must gather some clothes for him too for Dad to take for him to be discharged in. We have all his clothes still packed for vacation at the shore. We, Jim and I, did not sleep well last night. Jim's hay fever is very bad--but he is very patient with it. It's good I don't get hay fever. I couldn't function.

8:40 a.m. Tuesday Sept. l6, 1986 -- Mike's home. Just got up this morning and is fixing himself coffee and toast. Yesterday he was so happy to be home he made us happy. Those who hadn't seen him in a while--Joe and Tom--were pretty shocked in his appearance. But he has some spirit back. The contrast of the isolation imposed on Mike in the hospital and his freedom immediately on leaving the hospital is startling. He went out to supper with Rich R, and later today he plans to drive to Bloomfield to meet with someone from the Gay Activist League. The meeting with Disease Control just reinforced the information that the HIV III virus is not spread through casual contact. Mike was encouraged not to baby himself and to set goals and keep them. The day exhausted me emotionally. I was living in dread of the unknown. In a way I am still. I didn't sleep last night. But Mike was happy to be home and as Terry said--that was good to see. Terry is not as "scared" as she was. She didn't want to visit Mike in the hospital at first. Fear of contagion bothers her. We are taking precautions home here to make everyone feel better: plastic forks, knives, and spoons for Mike; plastic cups; his own coffee mug; alcohol wipes by the phones. He uses his own towels and soap, toothpaste, etc. It make things run smoother here. But-----------

6:30 p.m. Wednesday 9/17/86 -- Mike got a letter today from a student he had at William Paterson College (WPC) in 1983. Mike said the student doesn't know he has AIDS. Mike hasn't heard from him since 1983 but what a beautiful letter! The student's name is Michael, too (Michael S). Mike should be very proud. I am. Mike let me show the letter to Tom since Tom went to WPC. Today Mike's philosophy professor, Joe R, came to see Mike from 11:30 to 3:00 o'clock. They had a good visit, I guess, but Joe is a strange man--gentle, saintly. Mike wants to be stronger and well immediately. He doesn't like the way he looks. Each day he is gaining strength. He sleeps a little each morning and each afternoon. Dad wakes him so he doesn't sleep too much and then won't sleep at night, but he has slept straight through both nights he's been home. He's eating pretty well. He's already received work from the American Council on Education (ACE). I don't know whether he's attempted to do any of it yet, but he asked them to send it. I think work is good therapy. He's not babying himself. He was told not to. He is planning to spend time in Princeton, but I've heard him on the phone say he's still much too weak to attempt it. Terry just brought in an article in the Wall Street Journal 9/17/86--good--about a drug AZT for AIDS patients with pneumocysitis pneumonia. She's going to make copies of it for us. Evenings home, the last three at any rate, seem to be working out good for Mike. Jean's here; I come home; Tom's upstairs and down; Joe comes in; and then there's Terry (not forgetting Dad). We talk. (Gina isn't here if she's working 3:00-ll:00.) We talk about AIDS--but not only--tonight it was Terry preparing for her jazz adult class that she has to teach Saturday and what in the world she's going to teach her three-year-old ballerinas for an hour (two classes of them). Of course we were treated to a demonstration.

7:07 a.m. Sept. 18 -- "Sleep my child--may God attend thee--all through the night." That was last night's theme song. I slept well--at last. I hope the whole house did. This will be Mike's fourth day home. He has "gained" a little on each of the past three days.

Last night I saw him laugh--really laugh--a beautiful grin--beautiful white teeth. Earlier he had wanted me to see his tongue, but I wouldn't look. It is still giving him trouble. He can't "taste" liquids and has been drinking only water--no juice--coffee--coke. Food, he says, "tastes" all right. Also I've been wondering why he walks so stiffly, especially on getting up. He mentioned that his "butt" is so sore from the 14 shots. That symptom--in medical terminology--is mentioned as a side-effect of PENTAM 300. We talked, those who were in and out, last night about some of the things on all our minds. Maybe that's why I slept good. We talked about my not sleeping; how he feels most badly about causing the family any upsetment, heartache; he still fears going to Washington--because, he says, he won't have the family coming in and out. But he does seem determined to get there. He's made a dentist appointment. He told his dentist about his illness and the dentist is accepting him. He does not think he'll continue seeing the BUDDIES (Gay Activists). They talk about death all the time--this patient who has died and another who's dying, etc. etc. etc. It depresses him.

Dear Michael--may God attend thee and all of us--all through this event in our lives.

9/19/86 6:55 a.m. Friday--payday AZT--a new drug for AIDS--there was just a news report on NBC from San Francisco. That's the drug that Terry has a newspaper article on. No long-term results, as yet, but it's hope when there's little. I shouldn't say "little" in Mike's case. We, he, have great hope! Mike has great courage really. The very normalcy of every day's existence belies the fact that each minute of living is an act of courage--getting up, showering, eating, dressing, working at concentrating on bills, on the future; but Mike is doing this and with a certain amount of joy. He has said a number of times that we couldn't imagine how wonderful it is to just climb into bed upstairs after 28 days of sleeping in a hospital bed--to just BE there is beyond belief. Also how wonderful he's said it is to be here and watch the comings and goings of one and all.

Happiness is. There's that verb again! Joe R elaborated on that theme--of course--how Michael is so lucky. That he has time--has been given time to savor BEING--to savor the actual act of it. "Ordained" is what Joe said over the phone that night to Dad. We've been given time too to learn to know him and to love him as we haven't ever before.